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Health Literacy: A Prescription to End Confusion

Lynn Nielsen-Bohlman, Allison M. Panzer, David A. Kindig, Editors, Committee on Health Literacy

Committee on Health Literacy

Board on Neuroscience and Behavioral Health

Lynn Nielsen-Bohlman, Allison M. Panzer, David A. Kindig, Editors

Copyright © National Academy of Sciences. All rights reserved.

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NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance.

Support for this project was provided by the American Academy of Family Physi- cians Foundation, California HealthCare Foundation, Commonwealth Fund, W.K. Kellogg Foundation, MetLife Foundation, National Cancer Institute, Pfizer Corpo- ration, and the Robert Wood Johnson Foundation. The views presented in this report are those of the Institute of Medicine Committee on Health Literacy and are not necessarily those of the funding agencies.

Library of Congress Cataloging-in-Publication Data

Health literacy : a prescription to end confusion / editors, Lynn Nielsen-Bohlman ... [et al.] ; Committee on Health Literacy, Board on Neuroscience and Behavioral Health, [Institute of Medicine]. p. ; cm. Includes bibliographical references and index. ISBN 0-309-09117-9 (hardcover)—ISBN 0-309-52926-3 (pdf) 1. Health education—United States. 2. Literacy—United States. [DNLM: 1. Health Education—methods—United States. 2. Health Educa- tion—standards—United States. 3. Communication Barriers—United States. 4. Educational Status—United States. WA 590 H4362 2004] I. Nielsen-Bohlman, Lynn. II. Institute of Medicine (U.S.). Committee on Health Literacy. RA440.H43 2004 613′.07′1073—dc22

2004004829

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“Knowing is not enough; we must apply. Willing is not enough; we must do.”

—Goethe

Adviser to the Nation to Improve Health

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences.

The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engi- neers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is presi- dent of the National Academy of Engineering.

The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Coun- cil is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council.

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v

COMMITTEE ON HEALTH LITERACY

DAVID KINDIG, (Chair), Wisconsin Public Health & Health Policy Institute, University of Wisconsin at Madison

DYANNE D. AFFONSO, Faculty of Nursing, University of Toronto ERIC H. CHUDLER, University of Washington School of Medicine MARILYN H. GASTON, Assistant Surgeon General of the United States,

Retired CATHY D. MEADE, University of South Florida College of Medicine

H. Lee Moffitt Cancer Center & Research Institute RUTH PARKER, Emory University School of Medicine VICTORIA PURCELL-GATES, Michigan State University IRVING ROOTMAN, University of Victoria RIMA RUDD, Harvard University School of Public Health SUSAN C. SCRIMSHAW, School of Public Health, University of Illinois

at Chicago BILL SMITH, Academy for Educational Development

Board on Neuroscience and Behavioral Health Liaisons

NANCY E. ADLER, Departments of Psychiatry and Pediatrics, University of California, San Francisco

RICHARD G. FRANK, Department of Health Care Policy, Harvard Medical School, Boston, MA

Board on Health Promotion and Disease Prevention Liaison

IRVING ROOTMAN, University of Victoria

Study Staff

LYNN NIELSEN-BOHLMAN, Study Director ALLISON PANZER, Research Assistant BENJAMIN N. HAMLIN, Research Assistant ALLISON BERGER, Program Assistant

IOM Board on Neuroscience and Behavioral Health Staff

ANDREW M. POPE, Director TROY PRINCE, Administrative Assistant ROSA POMMIER, Finance Officer JUDY ESTEP, Senior Program Assistant

Copyright © National Academy of Sciences. All rights reserved.

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Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

Independent Report Reviewers

This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s (NRC’s)

Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and respon- siveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:

Moon Chen Jr., University of California, Davis School of Medicine Linda C. Degutis, Yale University Robert Graham, Agency for Healthcare Research and Quality James Hyde, Tufts University School of Medicine Irwin S. Kirsch, Educational Testing Service, Center for Global

Assessment Randall W. Maxey, National Medical Association Alan R. Nelson, American College of Physicians of Internal Medicine Joanne Nurss, Georgia State University, Emeritus Yolanda Partida, University of Southern California Debra Roter, Johns Hopkins University

Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions

vii

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or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Daniel L. Azarnoff, D.L. Azarnoff Associates, and Kristine Gebbie, Columbia University School of Nursing. Appointed by the NRC and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

viii INDEPENDENT REPORT REVIEWERS

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Acknowledgments

The committee was aided in its deliberations by the testimony and advice of many knowledgeable and experienced individuals, and the efforts of a dedicated committee and staff. Consultants to the com-

mittee contributed ideas and report materials. The committee thanks con- sultants Arlene Bierman, Agency for Healthcare Research and Quality; John Comings, Harvard University; Terry Davis, Louisiana State University Health Sciences Center; Julie Gazmararian, Emory University; David Howard, Emory University; Frank McClellan, Temple University; Scott Ratzan, Johnson and Johnson; Dean Schillinger, University of California at San Francisco and San Francisco General Hospital Medical Center; Steve Somers, Center for Health Care Strategies; and Barry Weiss, University of Arizona.

The committee acknowledges with appreciation the testimony and other assistance of many individuals committed to improving health literacy. These individuals are Paul S. Appelbaum, University of Massachusetts Medi- cal School; Cynthia Baur, U.S. Department of Health and Human Services; Nancy Berkman, RTI International; Alvin Billie, The Gathering Place; Cindy Brach, Agency for Healthcare Research and Quality; L. Natalie Carroll, National Medical Association; Carolyn Clancy, Agency for Healthcare Re- search and Quality; Eduardo Crespi, Centro Latino; Barbara DeBuono, Pfizer Pharmaceuticals Group; Darren A. DeWalt, University of North Carolina, Chapel Hill; Janice A. Drass, Centers for Medicare and Medicaid Services, DHHS; Joyce Dubow, AARP Public Policy Institute; Lawrence J. Fine, Office of Behavioral and Social Science Research, National Institutes

ix

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of Health; Heng L. Foong, Pacific Asian Language Services for Health; Robert Friedland, Georgetown University and Center on an Aging Society; Robert Graham, Agency for Healthcare Research and Quality; Rita Hargrave, University of California, Davis, and Veterans Medical Center of Northern California System of Clinics; Julie Hudman, Henry J. Kaiser Family Foundation Commission on Medicaid and the Uninsured; Marian James, Agency for Healthcare Research and Quality; Linda Johnston Lloyd, Health Resources and Services Administration; Lloyd J. Kolbe, Centers for Disease Control; Karen Lechter, Center for Drug Evaluation and Research, U.S. Food and Drug Administration; Estela Marin, Louisiana State Univer- sity Health Sciences Center; Ed Martinez, National Association of Public Hospitals and Health Systems; Frank M. McClellan, Temple University James E. Beasley School of Law; Linda Morse, New Jersey Office of Aca- demic and Professional Standards; Francisco Para, Latino Health Access; L. Gregory Pawlson, National Committee for Quality Assurance; Michael Pignone, University of North Carolina at Chapel Hill; Francis Prado, Latino Health Access; Sara Rosenbaum, George Washington University; Marisa Scala, Center for Medicare Education, American Association of Homes and Services for the Aging; Lauren Schwartz, New York City Poison Control Center; Joanne Schwartzberg, American Medical Association; Tetine Sentell, University of California at Berkeley; Judy A. Shea, University of Pennsylvania School of Medicine; Susan M. Shinagawa, National Asian- American and Pacific Islander Cancer Survivors and Advocacy Network; Colleen Sonosky, George Washington University; Anthony Tirone, Joint Commission on Accreditation of Healthcare Organizations; Tina Tucker, American Foundation for the Blind; and Marcia Zorn, National Library of Medicine.

Special thanks to K. Vish Viswanath and Patrick Weld of the Division of Cancer Control and Population Sciences of the National Cancer Insti- tute, Scott Ratzan of Johnson and Johnson, and to Barbara DeBuono and Joel Rosenquist of the Pfizer Pharmaceutical Group, for extra effort and repeated attention to the ongoing information needs and support of the study. The committee appreciates the efforts of Terry C. Pellmar for her dedication, effort, and commitment to moving this report from concept to reality in her role as Director of the Board on Neuroscience and Behavioral Health.

This report was made possible by the generous support of the American Academy of Family Physicians Foundation, California HealthCare Founda- tion, Commonwealth Fund, W.K. Kellogg Foundation, MetLife Founda- tion, National Cancer Institute, Pfizer Corporation, and the Robert Wood Johnson Foundation.

x ACKNOWLEDGMENTS

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Foreword

Clear communication is critical to successful health care. Patients convey their symptoms and medical history to caregivers; health professionals issue orders, results, and recommendations to one

another; and doctors, nurses, pharmacists, and others provide information and instructions to patients. Health professionals are trained to observe their patients keenly and to elicit a revealing history. Considerable effort and money are expended to automate reporting of test results and physician order entry so as to speed availability of clinical information and to reduce errors. However, comparatively little attention has been devoted to en- abling patients to comprehend their condition and treatment, to make the best decisions for their care, and to take the right medications at the right time in the intended dose. As this report makes clear, health literacy— enabling patients to understand and to act in their own interest—remains a neglected, final pathway to high-quality health care.

Tens of millions of U.S. adults are unable to read complex texts, includ- ing many health-related materials. Arcane language and jargon that become second nature to doctors and nurses are inscrutable to many patients. Adults who have a problem understanding written materials are often ashamed and devise methods to mask their difficulty. They may be reluctant to ask questions for fear of being perceived as ignorant. If health professionals were able to take the time to ask their patients to explain exactly what they understand about their diagnoses, instructions, and bottle labels, the care- givers would find many gaps in knowledge, difficulties in understanding, and misinterpretations. These problems are exacerbated by language and

xi

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cultural variation in our multicultural society, by technological complexity in health care, and by intricate administrative documents and requirements.

The Committee on Health Literacy here documents the problem and describes its origins, consequences, and solutions. The committee echoes the call of the Surgeon General and other health leaders on the import of health literacy, and it elaborates the cross-cutting priority for health literacy identified in the recent Institute of Medicine report on Priority Areas for National Action in Quality Improvement. Most importantly, the current report lays out a comprehensive strategy to improve health literacy in Amer- ica. While this will be neither easy nor completed quickly, individuals, educators, community groups, health professionals, medical institutions, industry, and government agencies can all contribute, and this report tells how.

Health Literacy: A Prescription to End Confusion is a landmark report on an underappreciated challenge. I am grateful to the committee and its staff for their work and hope that their report receives the audience, atten- tion, and action it deserves.

Harvey V. Fineberg, M.D., Ph.D. President Institute of Medicine

xii FOREWORD

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Preface

My understanding of the issues in health literacy was limited prior to taking on the role of Chair of this committee. From my expertise in defining and measuring population health and its

determinants, I appreciated the importance of the social determinants of health. I had speculated about the role of health literacy as one pathway by which education might exert an independent effect on health outcomes. But until this rich and intense interaction with my colleagues from diverse fields such as literacy, biology, health communication, anthropology, epidemiol- ogy, medicine, nursing, and health policy, combined with poignant testi- mony from those affected and other experts, I had no idea of the impor- tance and complexity of this topic.

I believe that what the United States puts into practice in medicine and health is much less than what is known. Only now do I know how pro- foundly the gap between knowledge and practice is widened by limited health literacy. Only now do I know why some refer to this as a “silent epidemic”—the lack of understanding by most professionals and policy makers of its extent and effect, and the individual shame associated with it that keeps it even more silent and hidden.

I hope that this report will produce several outcomes:

• It will become widely appreciated that 90 million adults with lim- ited health literacy cannot fully benefit from much that the health and health-care system have to offer.

• It will become widely understood that efforts to improve quality, to

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reduce costs, and to reduce disparities cannot succeed without simulta- neous improvements in health literacy.

• It will become widely understood that health literacy is more than reading, but includes writing, numeracy, listening, speaking, and concep- tual knowledge.

• It will be accepted that improving individual health literacy re- quires great effort from the public health and health-care systems, the education system, and society overall.

Chairing this committee was such a privilege and a challenge. We each struggled to overcome the limitations of our own knowledge and assump- tions. We could not have completed this work without the many hours devoted by committee members, those providing testimony, and Institute of Medicine staff, and the financial support of our sponsors. As one firmly committed to the translation of research into policy and practice, I hope this report, containing the results of our efforts, will identify substantial new resources, not only for the research needed to establish causal relation- ships and evaluate effective interventions, but also to expand the many promising interventions identified here. The significance of the problem is too great to wait for complete understanding before we act.

David A. Kindig, M.D., Ph.D. Chair

xiv PREFACE

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Contents

EXECUTIVE SUMMARY 1

1 INTRODUCTION 19 Social and Economic Factors and Health, 20 Living in a Society with High Literacy Demands, 21 Health Literacy as a Public Concern, 25 Charge to the Committee, 26 Scope of the Report, 27 References, 29

2 WHAT IS HEALTH LITERACY? 31 Definition of Health Literacy, 31 Definition of Literacy, 37 Literacy in Health Contexts, 41 Measures Used in Health Literacy Research, 43 Needs and Opportunities, 51 References, 55

3 THE EXTENT AND ASSOCIATIONS OF LIMITED HEALTH LITERACY 59 Literacy in America, 60 The Epidemiology of Limited Health Literacy, 65 The Associations of Limited Health Literacy, 81 References, 103

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4 CULTURE AND SOCIETY 108 Traditional Culture, 110 Mass Culture, 119 Opportunities to Improve Health Literacy, 126 References, 137

5 EDUCATIONAL SYSTEMS 142 The K-12 and University Education Systems, 143 The Adult Education System, 154 Education for Health Professionals, 157 References, 162

6 HEALTH SYSTEMS 167 The Context of Health Systems, 168 Opportunities in Health Systems, 201 References, 229

7 VISION FOR A HEALTH-LITERATE AMERICA 240 References, 242

APPENDIXES

A Data Sources and Methods 243 B Commissioned Papers

The Relationship Between Health Literacy and Medical Costs 256 David H. Howard

Improving Chronic Disease Care for Populations with Limited Health Literacy 267

Dean Schillinger Outside the Clinician-Patient Relationship: A Call to Action for Health Literacy 285

Barry D. Weiss C Sample Material from Selected Assessments of Literacy and

Health Literacy 301 Rapid Estimate of Adult Literacy in Medicine, 302 Excerpts from the Test of Functional Health Literacy in Adults, 304 Excerpts from the National Adult Literacy Survey, 308

D Committee and Staff Biographies 323

INDEX 331

xvi CONTENTS

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Tables, Figures, and Boxes

TABLES

2-1 Examples of Skills Needed for Health, 42

3-1 Percentage of Adult Population Groups with Literacy Skills at NALS Levels 1, 2, or 3–4, 64

3-2 The Epidemiology of Health Literacy Skills Among Various Populations, 70

3-3 Health-Related Associations of Health Literacy Skills, 84

4-1 Examples of Published Studies of Community-Based Interventions, 128

6-1 Examples of Informed Consent Text Provided by Institutional Review Boards at U.S. Medical Schools, 188

6-2 Frequency of Doing Health Literacy-Related Activities, 203 6-3 Samples of Published Studies of Interventions in Health-Care

Settings, 206

A-1 Summary of Respondents and Non-Respondents to Survey, 252

B-1 Representativeness of the Study Sample, 257 B-2 Characteristics of the Study Sample, 259 B-3 Predicted Health-Care Spending, 262

xvii

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B-4 In-Sample Prediction of Health Literacy and Total Costs, 263 B-5 How Organizations and Systems Might Act to Improve America’s

Health Literacy, 286 B-6 National Totals for Enrollees and Cost of Hospitalization and

Physician Service Health Plans for the Private Sector, United States, 2000, 291

B-7 Percentage of Adult Population Groups with Literacy Skills at NALS Levels 1 or 2, 294

C-1 REALM, 302 C-2 Scores and grade equivalents for the REALM, 303

FIGURES

ES-1 Potential points for intervention in the health literacy framework, 5

2-1 Health literacy framework, 33 2-2 Potential points for intervention in the health literacy

framework, 34 2-3 Components of literacy, 38

3-1 Mock-up presciption medication instructions in Bahasa Malaysia, the written language of Malaysia, 60

6-1 The concentric ecology of organizations in the health-care sector, 169

6-2 Difference between actual readability and target readability of informed consent documents, 189

6-3 National Institutes of Health grant funding over the 1997–2002 period, 196

6-4 Examples of pictograms for patient education, 215

A-1 Response to web-based survey, 251

B-1 Model for improvement of chronic illness care, 269 B-2 Improving chronic disease care: a framework based on

health literacy and related research, 271 B-3 Number of Medicare enrollees, 287 B-4 Federal spending for Medicare, 288 B-5 Predicted Medicare expenditures, 289

xviii TABLES, FIGURES, AND BOXES

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C-1 Prompt 1 for TOFHLA, 304 C-2 Prompt 10 for TOFHLA, 305 C-3 Article “Swimmer completes Manhattan marathon” used in

NALS, 309 C-4 Discrimination article used in NALS, 311 C-5 Korean jet article used in NALS, 313 C-6 Job application used in NALS, 314 C-7 Wage and tax statement used in NALS, 315 C-8 Sales graph used in NALS, 316 C-9 Energy chart used in NALS, 317 C-10 Bus schedule used in NALS, 318 C-11 Bank deposit slip used in NALS, 320 C-12 Peanut butter label used in NALS, 321 C-13 Home equity loan advertisement used in NALS, 322

BOXES

4-1 Sources of Health Information Reported in a Gallup Poll, 121 4-2 Selected Findings from Sex Matters, 122 4-3 Excerpt from the Introduction to “Language Access: Helping

Non-English Speakers Navigate Health and Human Services”, 135

5-1 The National Health Education Standards, 144

6-1 Rules for Redesigning Health-Care Processes, 178 6-2 State Medicaid Managed Care Contracts, 200 6-3 Example of a Consent Form for Participation in Smoking

Cessation Study, 216 6-4 Examples of Ongoing Approaches Using Technology-Based

Communication Techniques, 218 6-5 Chronic Disease Management Program, 222 6-6 Description of Project Toolbox, 223 6-7 Comments from Respondents to Survey, 227

A-1 First Workshop Hosted by the Committee on Health Literacy, 246

A-2 Second Workshop Hosted by the Committee on Health Literacy, 248

A-3 Third Workshop Hosted by the Committee on Health Literacy, 249

TABLES, FIGURES, AND BOXES xix

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1

Executive Summary

Understanding is a two-way street. —Eleanor Roosevelt

ABSTRACT

I have a very good doctor. He takes the time to explain things and break it down to me. Sometimes, though, I do get stuff that can be hard—like when I first came home from the hospital and I had all these forms and things I had to read. Some words I come across I just can’t quite understand (National Center for the Study of Adult Learning and Literacy, 2003).1

Nearly half of all American adults—90 million people—have difficulty understanding and acting upon health information. The examples below were selected from the many pieces of complex consumer health information used in America.

• From a research consent form: “A comparison of the effec- tiveness of educational media in combination with a counseling method on smoking habits is being examined.” (Doak et al., 1996)

1All vignettes in shaded text in this report represent actual stories or materials. Names were omitted in most cases to protect the privacy of the author, and stories may have been edited for brevity and clarity. If not otherwise attributed, vignettes were drawn from the experiences of members of the committee.

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2 HEALTH LITERACY

• From a consumer privacy notice: “Examples of such man- datory disclosures include notifying state or local health authorities regarding particular communicable diseases.”

• From a patient information sheet: “Therefore, patients should be monitored for extraocular CMV infections and retinitis in the opposite eye, if only one infected eye is being treated.”

Forty million Americans cannot read complex texts like these at all, and 90 million have difficulty understanding complex texts. Yet a great deal of health information, from insurance forms to advertising, contains complex text. Even people with strong lit- eracy skills may have trouble obtaining, understanding, and using health information: a surgeon may have trouble helping a family member with Medicare forms, a science teacher may not under- stand information sent by a doctor about a brain function test, and an accountant may not know when to get a mammogram.

This report defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan and Parker, 2000). However, health lit- eracy goes beyond the individual obtaining information. Health literacy emerges when the expectations, preferences, and skills of individuals seeking health information and services meet the expec- tations, preferences, and skills of those providing information and services. Health literacy arises from a convergence of education, health services, and social and cultural factors. Although causal relationships between limited health literacy and health outcomes are not yet established, cumulative and consistent findings suggest such a causal connection.

Approaches to health literacy bring together research and prac- tice from diverse fields. This report examines the body of knowl- edge in this emerging field, and recommends actions to promote a health-literate society. Increasing knowledge, awareness, and re- sponsiveness to health literacy among health services providers as well as in the community would reduce problems of limited health literacy. This report identifies key roles for the Department of Health and Human Services as well as other public and private sector organizations to foster research, guide policy development, and stimulate the development of health literacy knowledge, mea- sures, and approaches. These organizations have a unique and criti- cal opportunity to ensure that health literacy is recognized as an essential component of high-quality health services and health com- munication.

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EXECUTIVE SUMMARY 3

INTRODUCTION

A two-year-old is diagnosed with an inner ear infection and prescribed an antibiotic. Her mother understands that her daughter should take the pre- scribed medication twice a day. After carefully studying the label on the bottle and deciding that it doesn’t tell how to take the medicine, she fills a teaspoon and pours the antibiotic into her daughter’s painful ear (Parker et al., 2003).

Modern health systems make complex demands on the health con- sumer. As self-management of health care increases, individuals are asked to assume new roles in seeking information, under-

standing rights and responsibilities, and making health decisions for them- selves and others. Underlying these demands are assumptions about people’s knowledge and skills.

National and international assessments of adults’ ability to use written information suggest that these assumptions may be faulty. Current evidence reveals a mismatch between people’s skills and the demands of health sys- tems (Rudd et al., 2000a). Many people who deal effectively with other aspects of their lives may find health information difficult to obtain, under- stand, or use. While farmers may be able to use fertilizers effectively, they may not understand the safety information provided with the fertilizer. Chefs may create excellent dishes, but may not know how to create a healthy diet. Indeed, health literacy can be a hidden problem—because it is often not recognized by policy makers and health care providers, and be- cause people with low literacy skills or who are confused about health care may be ashamed to speak up about problems they encounter with the increasingly complex health system (Baker et al., 1996; Parikh et al., 1996). Without improvements in health literacy, the promise of scientific advances for improving health outcomes will be diminished.

The Institute of Medicine (IOM) convened the Committee on Health Literacy, composed of experts from a wide range of academic disciplines and backgrounds, to assess the problem of limited health literacy and to consider the next steps in this field. The committee addressed the following charge:

1. Define the scope of the problem of health literacy. The intent is to clarify the root problems that underlie health illiteracy. This would include identifying the affected populations and estimating the costs for society. Develop a set of basic indicators of health literacy to allow assessment of the extent of the problem at the individual, community, and national levels.

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4 HEALTH LITERACY

2. Identify the obstacles to a creating a health-literate public. These are likely to include the complexity of the health care system, the many and often contradictory health messages, rapidly advancing technologies, limits within public education to promote literacy of adults as well as children, etc.

3. Assess the approaches that have been attempted to increase health literacy both in the United States and abroad. Identify the gaps in research and programs that need to be addressed. The focus should be on public health interventions attempting to increase health literacy of the public rather than on improving health provider/primary care interactions.

4. Identify goals for health literacy efforts and suggest approaches to overcome the obstacles to health literacy in order to reach these goals. These might include research or policy initiatives, interventions, or collabo- rations that would promote health literacy.

WHAT IS HEALTH LITERACY?

In this report, the committee accepted the definition of health literacy presented by the National Library of Medicine (Selden et al., 2000) and used in Healthy People 2010 (HHS, 2000):

The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appro- priate health decisions (Ratzan and Parker, 2000).

Health literacy is a shared function of social and individual factors. Individuals’ health literacy skills and capacities are mediated by their edu- cation, culture, and language. Equally important are the communication and assessment skills of the people with whom individuals interact regard- ing health, as well as the ability of the media, the marketplace, and govern- ment agencies to provide health information in a manner appropriate to the audience.

The committee developed a framework for health literacy which identi- fies three major areas of potential intervention and forms the organiza- tional principle of this report (see Figure ES-1). This framework illustrates the potential influence on health literacy as individuals interact with educa- tional systems, health systems, and cultural and social factors, and suggests that these factors may ultimately contribute to health outcomes and costs. The proposed framework is a model, because available research supports only limited conclusions about causality. However, the cumulative effect of a body of consistent evidence suggests that causal relationships may exist between health literacy and health outcomes. Research is needed to estab- lish the nature of the causal relationships between and among the various factors portrayed in the framework.

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EXECUTIVE SUMMARY 5

The committee reviewed the strengths and limitations of currently avail- able measures of literacy and health literacy. Health literacy involves a range of social and individual factors, and includes cultural and conceptual knowledge, listening, speaking, arithmetical, writing, and reading skills. However, most of the tools currently available to measure health literacy primarily measure reading skills, and do not include other critical skills. Furthermore, adults’ reading abilities are often estimated with a “grade level” measure, an estimate that is imprecise at best. Advancement of the field of health literacy requires the development of new measures which can be used to establish baseline levels and monitor change over time.

Finding 2-1 Literature from a variety of disciplines is consistent in finding that there is strong support for the committee’s conclusion that health literacy, as defined in this report, is based on the interaction of individuals’ skills with health contexts, the health-care system, the educa- tion system, and broad social and cultural factors at home, at work, and in the community. The committee concurs that responsibility for health literacy improvement must be shared by these various sectors. The com- mittee notes that the health system does carry significant but not sole opportunity and responsibility to improve health literacy.

Finding 2-2 The links between education and health outcomes are strongly established. The committee concludes that health literacy may be

FIGURE ES-1 Potential points for intervention in the health literacy framework.

Health Outcomes and Costs

Potential Intervention Points

Health Literacy

Education System

Health System

3

2

Culture and

Society

1

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6 HEALTH LITERACY

one pathway explaining the well-established link between education and health, and warrants further exploration.

Finding 2-3 Health literacy, as defined in this report, includes a vari- ety of components beyond reading and writing, including numeracy, listen- ing, speaking, and relies on cultural and conceptual knowledge.

Finding 2-4 While health literacy measures in current use have spurred research initiatives and yield valuable insights, they are indicators of read- ing skills (word recognition or reading comprehension and numeracy), rather than measures of the full range of skills needed for health literacy (cultural and conceptual knowledge, listening, speaking, numeracy, writ- ing, and reading). Current assessment tools and research findings cannot differentiate among (a) reading ability, (b) lack of background knowledge in health-related domains, such as biology, (c) lack of familiarity with language and types of materials, or (d) cultural differences in approaches to health and health care. In addition, no current measures of health literacy include oral communication skills or writing skills and none measure the health literacy demands on individuals within different health contexts.

THE EXTENT AND ASSOCIATIONS OF LIMITED HEALTH LITERACY

Studies of health literacy or of literacy in health contexts suggest that limited health literacy skills, as measured by current assessment tools, are common, with significant variations in prevalence depending on the popu- lation sampled (see Chapter 3). People of all literacy levels may be able to manage texts that they frequently encounter and use for everyday activities, but will often face problems with difficult and confusing types of text (Kirsch et al., 1993).

Findings from the National Adult Literacy Survey (NALS) and Interna- tional Adult Literacy Surveys (IALS) indicate that a large percentage of adults lack the literacy skills needed to meet the demands of twenty-first century society. More than 47 percent, or 90 million, of U.S. adults have difficulty locating, matching, and integrating information in written texts with accuracy and consistency. Of the 90 million with limited literacy skills, about 40 million can perform simple and routine tasks using uncomplicated materials. An additional 50 million adults can locate information in moder- ately complicated texts, make inferences using print materials, and inte- grate easily identifiable pieces of information. However, they find it diffi- cult to perform these tasks when complicated by distracting information and complex texts (Kirsch, 2001; Kirsch et al., 1993).

These findings have serious implications for the health sector. Over 300

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EXECUTIVE SUMMARY 7

studies, conducted over three decades and assessing various health-related materials, such as informed consent forms and medication package inserts, have found that a mismatch exists between the reading levels of the materi- als and the reading skills of the intended audience. In fact, most of the assessed materials exceed the reading skills of the average high school graduate (Rudd et al., 2000a).

Studies suggest that while individuals with limited health literacy come from many walks of life, the problem of limited health literacy is often greater among older adults, people with limited education, and those with limited English proficiency (e.g., Beers et al., 2003; Gazmararian et al., 1999; Williams et al., 1995). For individuals whose native language is not English, issues of health literacy are compounded by issues of basic commu- nication and the specialized vocabulary used to convey health information.

Associations with Health Knowledge, Behavior, and Outcomes

Research linking limited health literacy as it is currently measured to health knowledge, health behaviors, and health outcomes is accumulating. Patients with limited health literacy and chronic illness have less knowledge of illness management than those with higher health literacy (Kalichman et al., 2000; Schillinger et al., 2002; Williams et al., 1998a, b). Compared to those with adequate health literacy, patients with limited health literacy have decreased ability to share in decision-making about prostate cancer treatment (Kim et al., 2001), lower adherence to anticoagulation therapy (Lasater, 2003; Win and Schillinger, 2003), higher likelihood of poor glyce- mic control (Schillinger et al., 2002), and lower self-reported health status (Arnold et al., 2001; Baker et al., 2002; Kalichman and Rompa, 2000; Kalichman et al., 2000; Williams et al., 1998a, b).

Financial Associations of Limited Health Literacy

The limited amount of data available suggests that there is an associa- tion between health literacy, health-care utilization, and health-care costs. Baker and others (2002) found that public hospital patients with limited health literacy had higher rates of hospitalization than those with adequate health literacy. This increased hospitalization rate may be associated with greater resource use. Another analysis (Friedland, 1998) concluded that the additional health expenditure attributable to inadequate reading skills (as identified by the NALS) in 1996 was $29 billion. This estimate would increase to $69 billion if as few as half the individuals with marginal reading skills were also not health literate. Weiss and Palmer (2004) re- ported on a direct measure of cost in a small sample of Medicaid patients in

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8 HEALTH LITERACY

Arizona. Patients with reading levels at or below third grade had mean Medicaid charges $7,500 higher than those who read above the third grade level.

For this report, David Howard examined the expenditure data col- lected in association with the Baker and colleagues (2002) utilization study (see Appendix B). He found that predicted inpatient spending for a patient with inadequate health literacy was $993 higher than that of a patient with adequate reading skills. A difference of $450 remained after controlling for health status, although the causality of the associations between health status and health-care cost could not be determined. In both analyses, higher emergency care costs were incurred by individuals with limited health literacy compared to those with marginal or adequate health lit- eracy as measured by the Test of Functional Health Literacy in Adults (TOFHLA), while pharmacy expenses were similar and outpatient expen- ditures lower.

Although a robust estimate for the effect of limited health literacy on health expenditures is lacking, the magnitudes suggested by the few studies that are available underscore the importance of addressing limited health literacy from a financial perspective.

Finding 3-1 About 90 million adults, an estimate based on the 1992 NALS, have literacy skills that test below high school level (NALS Level 1 and 2). Of these, about 40–44 million (NALS Level 1) have difficulty finding information in unfamiliar or complex texts such as newspaper ar- ticles, editorials, medicine labels, forms, or charts. Because the medical and public health literature indicates that health materials are complex and often far above high school level, the committee notes that approximately 90 million adults may lack the needed literacy skills to effectively use the U.S. health system. The majority of these adults are native-born English speakers. Literacy levels are lower among the elderly, those who have lower educational levels, those who are poor, minority populations, and groups with limited English proficiency such as recent immigrants.

Finding 3-2 On the basis of limited studies, public testimony, and committee members’ experience, the committee concludes that the shame and stigma associated with limited literacy skills are major barriers to improving health literacy.

Finding 3-3 Adults with limited health literacy, as measured by read- ing and numeracy skills, have less knowledge of disease management and of health-promoting behaviors, report poorer health status, and are less likely to use preventive services.

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EXECUTIVE SUMMARY 9

Finding 3-4 Two recent studies demonstrate a higher rate of hospital- ization and use of emergency services among patients with limited literacy. This higher utilization has been associated with higher health-care costs.

THE CONTEXTS OF HEALTH LITERACY AND OPPORTUNITIES FOR INTERVENTION

Culture and Society

The ho’ola said Mom should confess to me and before God Jehovah. She did. She asked me to forgive her and I did. I wasn’t angry. . . . And later Mom’s sickness left her. Of course, she still had diabetes, but the rest—being so confused and miserable—all that left her (Shook, 1985: 109).

Culture is the shared ideas, meanings, and values that are acquired by individuals as members of a society. Culture is socially learned, continually evolves, and often influences us unconsciously. We learn culture through interactions with others, as well as through the tangible products of culture such as books and television (IOM, 2002). Culture gives significance to health information and messages, and can shape perceptions and defini- tions of health and illness, preferences, language and cultural barriers, care process barriers, and stereotypes. These culturally influenced perceptions, definitions, and barriers can affect how people interact with the health care system and help to determine the adequacy of health literacy skills in differ- ent settings.

The fluid nature of culture means that health-care encounters are rich with differences that are continuously evolving. Differing cultural and educational backgrounds between patients and providers, as well as be- tween those who create health information and those who use it, may contribute to problems in health literacy. Culture, cultural processes, and cross-cultural interventions have been discussed in depth in several recent IOM reports and represent possible nexuses of culture and health literacy (IOM, 2002, 2003a).

It is important to understand how people obtain and use health infor- mation in order to understand the potential impact of health literacy. Infor- mation about health is produced by many sources, including the govern- ment and the food and drug industries, and is distributed by the popular media. Commercial and social marketing of health information, products, and services is a multibillion dollar industry. People are frequently and repeatedly exposed to quick, often contradictory bits of information. This

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10 HEALTH LITERACY

inundation with information has increased as the Internet has become an increasingly important source of health information. Socioeconomic status, education level, and primary language all affect whether consumers will seek out health information, where they will look for the information, what type of information they prefer, and how they will interpret that informa- tion. Limited health literacy decreases the likelihood that health-related information will be accessible to all (Houston and Allison, 2002).

Finding 4-1 Culture gives meaning to health communication. Health literacy must be understood and addressed in the context of culture and language.

Finding 4-2 More than 300 studies indicate that health-related mate- rials far exceed the average reading ability of U.S. adults.

Finding 4-3 Competing sources of health information (including the national media, the Internet, product marketing, health education, and consumer protection) intensify the need for improved health literacy.

Finding 4-4 Health literacy efforts have not yet fully benefited from research findings in social and commercial marketing.

The Educational System

Adult education is an important resource for individuals with limited literacy or limited English proficiency. A major source of support for Ameri- can adult education programs in literacy is the U.S. adult basic education and literacy (ABEL) system. ABEL programs provide classes in topics that support health literacy including basic literacy and math skills, English language, and high school equivalence, and predominantly serve students with literacy and math skills in NALS Levels 1, 2, or the low end of NALS Level 3. Sadly, these programs serve far fewer than the millions of Ameri- cans who could benefit.

Both childhood literacy education and childhood health education can provide a basis for health literacy in adulthood. Although most elementary, middle, and high schools require students to take health education, the sequence of coursework is not coordinated. The percentage of schools that require health education increases from 33 percent in kindergarten to 44 percent in grade 5, but then falls to 10 percent in grade 9, and 2 percent in grade 12. The absence of a coordinated health education program across grade levels may impede student learning of needed health literacy skills. Furthermore, only 9.6 percent of health education classes have a teacher

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EXECUTIVE SUMMARY 11

who majored in health education or in combined health and physical edu- cation (Kann et al., 2001).

In 1995, the Joint Committee on National Health Standards published the National Health Education Standards with the subtitle Achieving Health Literacy. These standards describe the knowledge and skills essential for health literacy, and detail what students should know and be able to do in health education by the end of grades 4, 8, and 11. They provide a frame- work for curricula development and student assessment. Unfortunately, these standards have not been widely met.

Finding 5-1 Significant obstacles and barriers to successful health lit- eracy education exist in K-12 education programs.

Finding 5-2 Opportunities for measuring literacy skill levels required for health knowledge and skills, and for the implementation of programs to increase learner’s skill levels, currently exist in adult education programs and provide promising models for expanding programs. Studies indicate a desire on the part of adult learners and adult education programs to form partnerships with health communities.

Finding 5-3 Health professionals and staff have limited education, training, continuing education, and practice opportunities to develop skills for improving health literacy.

Health Systems

Health systems in the United States are complex and often confusing. Their complexity derives from the nature of health care and public health itself, the mix of public and private financing, and the variations across states and between types of delivery settings. An adult’s ability to navigate these systems may reflect this systemic complexity in addition to individual skill levels. Even highly skilled individuals may find the systems too compli- cated to understand, especially when these individuals are made more vul- nerable by poor health. Directions, signs, and official documents, including informed consent forms, social services forms, public health information, medical instructions, and health education materials, often use jargon and technical language that make them unnecessarily difficult to use (Rudd et al., 2000b). In addition, cultural differences may affect perceptions of health, illness, prevention, and health care. Lack of mutual understanding of health, illness and treatments, and risks and benefits has implications for behavior for both providers and consumers, and legal implications for providers and health systems. Imagine having to face this complexity if you

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12 HEALTH LITERACY

are one of the 90 million American adults who lack the functional literacy skills in English to use the U.S. health care system.2

Health literacy permeates all areas of the provider–consumer informa- tion exchange, and provides a common pathway for the successful transfer of information. A number of emerging areas are likely to increase the burden of limited health literacy on those entering and using the health-care system. These include demands inherent in chronic disease management, increased use of new technologies, decreased time for patient/provider dis- cussions, and legal and regulatory requirements.

Many different interventions and approaches that may hold promise for addressing limited health literacy are being attempted across health-care systems, professional organizations, federal and state agencies, educational institutions, and community and advocacy groups across the United States and in other countries. Those profiled in the report are indicators of the creativity and promise for future improvements in countering the effects of limited health literacy. However, few of these approaches have been for- mally evaluated, and most are fragmented single approaches rather than part of a systematic approach to health literacy. In order for progress to be made, many more systematic demonstrations must be funded and rigor- ously evaluated.

Finding 6-1 Demands for reading, writing, and numeracy skills are intensified due to health-care systems’ complexities, advancements in scien- tific discoveries, and new technologies. These demands exceed the health- literacy skills of most adults in the United States.

Finding 6-2 Health literacy is fundamental to quality care, and relates to three of the six aims of quality improvement described in the IOM Quality Chasm Report: safety, patient-centered care, and equitable treat- ment. Self-management and health literacy have been identified by IOM as cross-cutting priorities for health-care quality and disease prevention.

Finding 6-3 The readability levels of informed consent documents (for research and clinical practice) exceed the documented average reading levels of the majority of adults in the United States. This has important ethical and legal implications that have not been fully explored.

VISION FOR A HEALTH-LITERATE AMERICA

The evidence and judgment presented in this report indicate that heath literacy is important to improving the health of individuals and popula-

2See Finding 3-1.

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EXECUTIVE SUMMARY 13

tions. This is supported by the conclusions and statements of others. Health literacy was one of two cross-cutting factors that affect health care identi- fied by the IOM in its recent report Priority Areas for National Action in Quality Improvement (IOM, 2003b). The Surgeon General recently stated that “health literacy can save lives, save money, and improve the health and well being of millions of Americans . . . health literacy is the currency of success for everything I am doing as Surgeon General” (Carmona, 2003).

More needs to be known about the causal pathways between education and health, the role of literacy, and the discrete contribution of health literacy to health. With this knowledge we will be able to understand which interventions and approaches are the most appropriate and effective. This Committee believes that a health-literate America is an achievable goal. We envision a society within which people have the skills they need to obtain, interpret, and use health information appropriately and in meaningful ways. We envision a society in which a variety of health systems structures and institutions take responsibility for providing clear communication and ad- equate support to facilitate health-promoting actions based on understand- ing. We believe a health-literate America would be a society in which:

• Everyone has the opportunity to improve their health literacy. • Everyone has the opportunity to use reliable, understandable infor-

mation that could make a difference in their overall well-being, including everyday behaviors such as how they eat, whether they exercise, and whe- ther they get checkups.

• Health and science content would be basic parts of K-12 curricula. • People are able to accurately assess the credibility of health infor-

mation presented by health advocate, commercial, and new media sources. • There is monitoring and accountability for health literacy policies

and practices. • Public health alerts, vital to the health of the nation, are presented

in everyday terms so that people can take needed action. • The cultural contexts of diverse peoples, including those from vari-

ous cultural groups and non-English-speaking peoples, are integrated in to all health information.

• Health practitioners communicate clearly during all interactions with their patients, using everyday vocabulary.

• There is ample time for discussions between patients and health- care providers.

• Patients feel free and comfortable to ask questions as part of the healing relationship.

• Rights and responsibilities in relation to health and health care are presented or written in clear, everyday terms so that people can take needed action.

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14 HEALTH LITERACY

• Informed consent documents used in health care are developed so that all people can give or withhold consent based on information they need and understand.

While achieving this vision is a profound challenge, we believe that significant progress can and must be made over the coming years, so that the potential for optimal health can benefit all individuals and populations in our society.

Recommendation 2-1 The Department of Health and Human Services and oth- er government and private funders should support research leading to the devel- opment of causal models explaining the relationships among health literacy, the education system, the health system, and relevant social and cultural systems.

Recommendation 2-2 The Department of Health and Human Services and pub- lic and private funders should support the development, testing, and use of cultur- ally appropriate new measures of health literacy. Such measures should be devel- oped for large ongoing population surveys, such as the National Assessment of Adult Literacy Survey, Medical Expenditure Panel Survey, and Behavioral Risk Factor Surveillance System, and the Medicare Beneficiaries Survey, as well as for institutional accreditation and quality assessment activities such as those carried out by the Joint Commission on Accreditation of Healthcare Organizations and the National Committee for Quality Assurance. Initially, the National Institutes of Health should convene a national consensus conference to initiate the development of operational measures of health literacy which would include contextual measures.

Recommendation 3-1 Given the compelling evidence noted above, funding for health literacy research is urgently needed. The Department of Health and Human Services, especially the National Institutes of Health, Agency for Healthcare Re- search and Quality, Health Resources and Services Administration, the Centers for Disease Control and Prevention, Department of Defense, Veterans Administra- tion, and other public and private funding agencies should support multidisciplinary research on the extent, associations, and consequences of limited health literacy, including studies on health service utilization and expenditures.

Recommendation 4-1 Federal agencies responsible for addressing disparities should support the development of conceptual frameworks on the intersection of culture and health literacy to direct in-depth theoretical explorations and formulate the conceptual underpinnings that can guide interventions.

4-1.a The National Institutes of Health should convene a consensus confer- ence, including stakeholders, to develop methodology for the incorporation of health literacy improvement into approaches to health disparities. 4-1.b The Office of Minority Health and Agency for Healthcare Research and Quality should develop measures of the relationships between culture, language, cultural competency, and health literacy to be used in studies of the relationship between health literacy and health outcomes.

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EXECUTIVE SUMMARY 15

Recommendation 4-2 The Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Indian Health Service, the Health Resources and Services Administration, and the Substance Abuse and Mental Health Services Administration should develop and test approaches to improve health communication that foster healing relationships across culturally diverse populations. This includes investigations that explore the effect of existing and innovative communication approaches on health behaviors, and studies that ex- amine the impact of participatory action and empowerment research strategies for effective penetration of health information at the community level.

Recommendation 5-1 Accreditation requirements for all public and private edu- cational institutions should require the implementation of the National Health Edu- cation Standards.

Recommendation 5-2 Educators should take advantage of the opportunity pro- vided by existing reading, writing, reading, oral language skills, and mathematics curricula to incorporate health-related tasks, materials, and examples into existing lesson plans.

Recommendation 5-3 The Health Resources and Services Administration and the Centers for Disease Control and Prevention, in collaboration with the Depart- ment of Education, should fund demonstration projects in each state to attain the National Health Education Standards and to meet basic literacy requirements as they apply to health literacy.

Recommendation 5-4 The Department of Education in association with the De- partment of Health and Human Services should convene task forces comprised of appropriate education, health, and public policy experts to delineate specific, fea- sible, and effective actions relevant agencies could take to improve health literacy through the nation’s K-12 schools, 2-year and 4-year colleges and universities, and adult and vocational education.

Recommendation 5-5 The National Science Foundation, the Department of Ed- ucation, and the National Institute of Child Health and Human Development should fund research designed to assess the effectiveness of different models of combin- ing health literacy with basic literacy and instruction. The Interagency Education Research Initiative, a federal partnership of these three agencies, should lead this effort to the fullest extent possible.

Recommendation 5-6 Professional schools and professional continuing educa- tion programs in health and related fields, including medicine, dentistry, pharmacy, social work, anthropology, nursing, public health, and journalism, should incorpo- rate health literacy into their curricula and areas of competence.

Recommendation 6-1 Health care systems, including private systems, Medi- care, Medicaid, the Department of Defense, and the Veterans Administration should develop and support demonstration programs to establish the most effec-

Continued

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16 HEALTH LITERACY

tive approaches to reducing the negative effects of limited health literacy. To ac- complish this, these organizations should:

• Engage consumers in the development of health communications and in- fuse insights gained from them into health messages.

• Explore creative approaches to communicate health information using print- ed and electronic materials and media in appropriate and clear language. Messag- es must be appropriately translated and interpreted for diverse audiences.

• Establish methods for creating health information content in appropriate and clear language using relevant translations of health information.

• Include cultural and linguistic competency as an essential measure of qual- ity of care.

Recommendation 6-2 The Department of Health and Human Services should fund research to define the needed health literacy tasks and skills for each of the priority areas for improvement in health care quality. Funding priorities should in- clude participatory research which engages the intended populations.

Recommendation 6-3 Health iteracy assessment should be a part of health- care information systems and quality data collection. Public and private accredita- tion bodies, including Medicare, the National Committee for Quality Assurance, and the Joint Commission on Accreditation of Healthcare Organizations should clearly incorporate health literacy into their accreditation standards.

Recommendation 6-4 The Department of Health and Human Services should take the lead in developing uniform standards for addressing health literacy in research applications. This includes addressing the appropriateness of research design and methods and the match among the readability of instruments, the liter- acy level, and the cultural and linguistic needs of study participants. In order to achieve meaningful research outcomes in all fields:

• Investigators should involve patients (or subjects) in the research process to ensure that methods and instrumentation are valid and reliable and in a language easily understood. • The National Institutes of Health should collaborate with appropriate federal agencies and institutional review boards to formulate the policies and criteria to ensure that appropriate consideration of literacy is an integral part of the approval of research involving human subjects. • The National Institutes of Health should take literacy levels into account when considering informed consent in human subjects research. Institutional Review Boards should meet existing standards related to the readability of informed con- sent documents.

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EXECUTIVE SUMMARY 17

REFERENCES

Arnold CL, Davis TC, Berkel HJ, Jackson RH, Nandy I, London S. 2001. Smoking status, reading level, and knowledge of tobacco effects among low-income pregnant women. Preventive Medicine. 32(4): 313–320.

Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, Imara M. 1996. The health care experience of patients with low literacy. Archives of Family Medicine. 5(6): 329–334.

Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J. 2002. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. American Journal of Public Health. 92(8): 1278–1283.

Beers BB, McDonald VJ, Quistberg DA, Ravenell KL, Asch DA, Shea JA. 2003. Disparities in health literacy between African American and non-African American primary care pa- tients. Abstract. Journal of General Internal Medicine. 18(Supplement 1): 169.

Carmona RH. 2003. Health Literacy in America: The Role of Health Care Professionals. Prepared Remarks given at the American Medical Association House of Delegates Meet- ing. Saturday, June 14, 2003. [Online]. Available: http://www.surgeongeneral.gov/news/ speeches/ama061403.htm [accessed: August, 2003].

Doak LG, Doak CC, Meade CD. 1996. Strategies to improve cancer education materials. Oncology Nursing Forum. 23(8): 1305–1312.

Friedland R. 1998. New estimates of the high costs of inadequate health literacy. In: Proceed- ings of Pfizer Conference “Promoting Health Literacy: A Call to Action.” October 7–8, 1998, Washington, DC: Pfizer, Inc. Pp. 6–10.

Gazmararian JA, Baker DW, Williams MV, Parker RM, Scott T, Greemn DCFSN, Ren J, Koplan JP. 1999. Health literacy among Medicare enrollees in a managed care organiza- tion. Journal of the American Medical Association. 281(6): 545–551.

HHS (U.S. Department of Health and Human Services). 2000. Healthy People 2010: Under- standing and Improving Health. Washington, DC: U.S. Department of Health and Hu- man Services.

Houston TK, Allison JJ. 2002. Users of Internet health information: Differences by health status. Journal of Medical Internet Research. 4(2): E7.

IOM (Institute of Medicine). 2002. Speaking of Health: Assessing Health Communication Strategies for Diverse Populations. Washington, DC: The National Academies Press.

IOM (Institute of Medicine). 2003a. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, Editors. Washington, DC: The National Academies Press.

IOM (Institute of Medicine). 2003b. Priority Areas for National Action: Transforming Health- care Quality. Adams K, Corrigan JM, Editors. Washington, DC: The National Acad- emies Press.

Kalichman SC, Rompa D. 2000. Functional health literacy is associated with health status and health-related knowledge in people living with HIV-AIDS. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology. 25(4): 337–344.

Kalichman SC, Benotsch E, Suarez T, Catz S, Miller J, Rompa D. 2000. Health literacy and health-related knowledge among persons living with HIV/AIDS. American Journal of Preventive Medicine. 18(4): 325–331.

Kann L, Brener ND, Allensworth DD. 2001. Health education: Results from the School Health Policies and Programs Study 2000. Journal of School Health. 71(7): 266–278.

Kim SP, Knight SJ, Tomori C, Colella KM, Schoor RA, Shih L, Kuzel TM, Nadler RB, Bennett CL. 2001. Health literacy and shared decision making for prostate cancer pa- tients with low socioeconomic status. Cancer Investigation. 19(7): 684–691.

Kirsch IS. 2001. The International Adult Literacy Survey (IALS): Understanding What Was Measured. Princeton, NJ: Educational Testing Service.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

18 HEALTH LITERACY

Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. 1993. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey (NALS). Washington, DC: National Center for Education Statistics, U.S. Department of Education.

Lasater L. 2003. Patient literacy, adherence, and anticoagulation therapy outcomes: A pre- liminary report. Abstract. Journal of General Internal Medicine. 18(Supplement 1): 179.

National Center for the Study of Adult Learning and Literacy. (Harvard School of Public Health, Department of Society, Human Development and Health). 2003. Voices from Experience. [Online]. Available: http://www.hsph.harvard.edu/healthliteracy/voices.html [accessed: December 4, 2003].

Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. 1996. Shame and health literacy: The unspoken connection. Patient Education and Counseling. 27(1): 33–39.

Parker RM, Ratzan SC, Lurie N. 2003. Health literacy: A policy challenge for advancing high-quality health care. Health Affairs. 22(4): 147.

Ratzan SC, Parker RM. 2000. Introduction. In: National Library of Medicine Current Bibli- ographies in Medicine: Health Literacy. NLM Pub. No. CBM 2000-1. Selden CR, Zorn M, Ratzan SC, Parker RM, Editors. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.

Rudd R, Moeykens BA, Colton TC. 2000a. Health and literacy. A review of medical and public health literature. In: Annual Review of Adult Learning and Literacy. Comings J, Garners B, Smith C, Editors. New York: Jossey-Bass.

Rudd RE, Colton T, Schacht R. 2000b. An Overview of Medical and Public Health Litera- ture Addressing Literacy Issues: An Annotated Bibliography. Report #14. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.

Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GaD, Bindman AB. 2002. Association of health literacy with diabetes outcomes. Journal of the American Medical Association. 288(4): 475–482.

Selden CR, Zorn M, Ratzan SC, Parker RM. 2000. National Library of Medicine Current Bibliographies in Medicine: Health Literacy. NLM Pub. No. CBM 2000-1. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.

Shook EV. 1985. Ho’oponopono: Contemporary Uses of a Hawaiian Problem-Solving Pro- cess. Honolulu, HI: East-West Center, University of Hawaii Press.

Weiss BD, Palmer R. 2004. Relationship between health care costs and very low literacy skills in a medically needy and indigent Medicaid population. Journal of the American Board of Family Practice. 17(1): 44–47.

Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K, Coates WC, Nurss JR. 1995. Inadequate functional health literacy among patients at two public hospitals. Journal of the American Medical Association. 274(21): 1677–1682.

Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. 1998a. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 114(4): 1008–1015.

Williams MV, Baker DW, Parker RM, Nurss JR. 1998b. Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hyper- tension and diabetes. Archives of Internal Medicine. 158(2): 166–172.

Win K, Schillinger D. 2003. Understanding of warfarin therapy and stroke among ethnically diverse anticoagulation patients at a public hospital. Abstract. Journal of General Inter- nal Medicine. 18(Supplement 1): 278.

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19

1

Introduction

A two-year-old is diagnosed with an inner ear infection and prescribed an antibiotic. Her mother understands that her daughter should take the pre- scribed medication twice a day. After carefully studying the label on the bottle and deciding that it doesn’t tell how to take the medicine, she fills a teaspoon and pours the antibiotic into her daughter’s painful ear (Parker et al., 2003).

Health consumers face numerous challenges as they seek health information, including the complexity of the health systems, the rising burden of chronic disease, the need to engage as partners in

their care, and the proliferation of consumer information available from numerous and diverse sources. Individuals are asked to assume new roles in seeking information, advocating for their rights and privacy, understanding responsibilities, measuring and monitoring their own health and that of their community, and making decisions about insurance and options for care. Underlying these complex demands are the varying and sometimes inadequate levels of, first, consumer knowledge and, second, skills for using and applying a wide range of health information.

In their work, health care educators and providers make assumptions about an individual’s ability to comprehend health information. However over 300 studies have shown that health information cannot be understood by most of the people for whom it was intended, suggesting that the as- sumptions regarding the recipient’s level of health literacy made by the

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20 HEALTH LITERACY

creators of this information are often incorrect. Over the past decade, concerns related to literacy skills and health provided a wake-up call to many in the health fields. Health literacy, a newly emerging field of inquiry and practice, focuses on literacy concerns within the context of health. The committee defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan and Parker, 2000), and views health literacy as a shared function of social and individual factors. This chapter will provide an overview of health literacy and this report in a broad societal context; please refer to Chapter 2 for an in-depth discussion of the definition and conceptual basis of health literacy.

SOCIAL AND ECONOMIC FACTORS AND HEALTH

Epidemiologists have been able to document links between socioeco- nomic status and health, and links between educational attainment and health. A 1998 report from the U.S. Department of Health and Human Services offered evidence from accumulated studies that health, morbidity, and mortality are related to income and education factors (Pamuk et al., 1998). For example, life expectancy is related to family income. So too are death rates from cancer and heart disease, incidences of diabetes and hyper- tension, and use of health services. Similarly, death rates for chronic dis- ease, communicable diseases, and injuries as reported in 1998 were in- versely related to education: those with lower education achievement are more likely to die of a chronic disease than are those with higher education achievement. In essence, the lower your income or educational achieve- ment, the worse your health.

Some researchers have suggested that education provides a key to un- derstanding these relationships. Grossman and Kaestner (1997) asserted that “Years of formal schooling completed is the most important correlate of good health.” House and colleagues (1994) noted that “A causal impact of education on health is highly plausible.” However, research has not yet fully examined other aspects or measures of education beyond years in school such as knowledge and skills. Literacy is one set of skills related to education. National literacy assessments indicate that literacy is a set of measurable skills (Kirsch, 2001) that includes reading, writing, listening, speaking, and arithmetical skills. Chapter 3 discusses the research that exists on the relationship between literacy and health.

Culture and ethnicity also influence health, and Chapter 4 of this report includes a discussion of their relationship with health literacy. Culture and ethnicity are often blended into categories of race which may not represent scientifically sound classifications. As discussed in a recent Institute of Medi- cine (IOM) report, Speaking of Health (IOM, 2002), race is not a meaning-

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INTRODUCTION 21

ful biological classification system for human populations, and even ethnicity can be interpreted too rigidly. This IOM report drew on current anthropological thinking to suggest that both individuals and populations should be assessed in terms of the influences on their lives and cultural histories, or “experiential identity.” This experiential identity may include influences from multiple cultures and languages, sometimes within the same family, but more often from life experiences. People’s knowledge and un- derstanding of their health, and their health literacy, are based on a com- posite of these life experiences. In this report, the terms race and ethnicity will be used in the discussions of population studies.

LIVING IN A SOCIETY WITH HIGH LITERACY DEMANDS

Every day, millions of adults must make decisions and take actions on issues that protect not only their own well-being, but also that of their family members and communities. These actions are not confined to tradi- tional health-care settings such as doctors and dentists’ offices, hospitals, and clinics. They take place in homes, at work, in schools, and in commu- nity forums across the country. Health-related activities are part of the daily life of adults, whether they are sick or well.

At home, parents may have to calculate a child’s weight and age to determine the correct dosage of an over-the-counter medicine. People are also expected to follow directions from health-care providers, presented verbally or in writing, during recovery from an illness or the management of a chronic disease. At work, employees may need to determine correct workstation placement or safe use of toxic chemicals. Safety warnings are posted in the community, and at work, and are discussed in newspapers and on television. Many health-related decisions are made in the market- place. When reading nutritional information on food labels, for example, consumers are expected to understand that calculation of sugar content must include the sugar listed on the snack food label as well as the fructose and corn syrup. In the pharmacy, consumers must differentiate between a cough syrup that is an expectorant and one that is a suppressor.

Examples of language taken from actual product and warning labels

• Topical antiseptic bactericide/viricide for degerming skin and mucus membranes • Non-potable water • Notify appropriate authorities

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22 HEALTH LITERACY

In medical care settings, health-care providers expect patients to pro- vide accurate health histories and descriptions of their symptoms, as well as listen to and comprehend verbal instructions (Roter et al., 1998).

Sometimes the doctors and pharmacy use the type of words that are some- times hard. I mean sometimes there’s some word that, it’s there, but you don’t know what it means. They are using those fine words, those college words, that are hard for people like me to understand and read (Rudd and DeJong, 2000).

Adults need to meet the demands of bureaucracies and institutions to access health programs and services. For example, adults are asked to fill out insurance forms, understand their rights and responsibilities, provide medical history, and provide informed consent for medical procedures. The documents required for some of these activities often contain legal and scientific terms unfamiliar to many individuals.

Signs and directions posted for employees and visitors outside and within institutions are often inadequate. As Baker and colleagues noted in a study based on patient focus groups at two public hospitals, many of the patients did not benefit from signs indicating that the nephrology unit was straight ahead. The nephrologists, however, most likely knew where to go (Baker et al., 1996; Rudd, 2002).

An inability to speak English at all or an ability to speak with only limited proficiency presents additional obstacles to understanding health information and accessing health care. These obstacles are compounded when written translations and trained translators are not available (Carras- quillo et al., 1999; Flores et al., 2003; IOM, 2003a; Sarver and Baker, 2000).

When I started six months ago, it was a new job and it was transporting patients. So we got a dispatcher. We had to call back to the floor and get the orders where to take the patients. I went looking for about 30 minutes. The patient and I were lost (Rudd and DeJong, 2000).

The presentation of health information is often unnecessarily complex. Findings from three decades of early medical and public health studies examining the reading level of print materials developed for patient educa- tion and for procedures and processes in the health-care setting (Rudd et al., 2000) established that most health materials fall into reading level ranges requiring high school, college, or graduate degrees. Overall, the

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INTRODUCTION 23

literacy demands of health materials exceeded the reading abilities of the average American adult.

In addition, the language typically used by those working in health and medicine is filled with scientific jargon. This increases the difficulty for the average consumer. References are made to biological systems (e.g., endo- crine) and anatomy (e.g., atrial valve) as well as to groupings of diseases and disorders (e.g., renal, cardiovascular, neurological, respiratory) that are not typically used in everyday conversation. Furthermore, they are scientific terms not typically taught in the K-12 school system. For example, many people do not know that they have bronchi or where they are located; yet those with asthma will be presented with the very critical information that this chronic disease involves inflammation of the bronchi and that a par- ticular type of medicine helps. A person’s ability to understand health, medical issues, and directions is related to the clarity of the communication.

Of course, literacy demands differ by setting and by circumstance. The types of health information a person is exposed to changes as a person’s life changes. Sociological and anthropological research has documented that literacy practices are inextricably intertwined and shaped by life circum- stances (Barton and Hamilton, 1998; Purcell-Gates et al., 2000; Street,

After being diagnosed with recurrent aphthous stomatitis involving the epithelium of the buccal mucosa, Winston did what he thought was necessary.

Which is a funny thing to do for a canker.

SOURCE: Canadian Public Health Association, Plain Language Service. Reprinted with permission.

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24 HEALTH LITERACY

2001). For example, a woman is more likely to receive information about hormone replacement therapy after menopause rather than when she is a teenager. Purcell-Gates documented how literacy demands changed in the lives of adult education students because of life events such as a new living situation or a change in a family member’s health. For example, the adults in this study reported that new health literacy demands arose with the birth of their children. They were required to fill out health history forms, main- tain vaccination records, and keep track of their children’s appointments with health-care workers. They needed to read and understand dosage instructions on over-the-counter and prescription medications for their in- fants. They were required to install car seats by following printed direc- tions. Those with school-aged children needed to read and sign materials sent home from school related, for example, to lunch programs or field trips.

Changes in their own or a family member’s health were often reported as initiating a change in literacy practice. A commonly reported change was the beginning of, or increase in, reading associated with medicines: print on medicine bottles, prescriptions, and directions from doctors. Many reported a need to read the print on food containers for the first time as part of the vigilance required in managing a chronic illness like diabetes. Following a health change that necessitated repeated doctor visits, people found and read medical reference books, and began to use personal calendars and appointment books (Purcell-Gates et al., 2000).

Demands on an individual’s literacy skills can create a barrier to the use and understanding of health tools and information. In many ways, literacy serves as a social determinant of health when a mismatch exists between the skills of the individual and the literacy skill demands of the health context. Poor communication, whether it be based on faulty assumptions, inappro- priate language, incomplete disclosures, or hidden confusion, does a disser- vice to clients as well as to health-care professionals. When words get in the way, the communication process fails, leading to confusion, loss of dignity, and unhealthful outcomes.

Another result of this failure of communication is that limited health literacy is often undetected, in part because individuals with limited literacy skills may feel ashamed. People may not be at ease acknowledging reading difficulties or vocabulary limitations. Consequently, they may feel shame or mask these difficulties in order to maintain dignity (Baker et al., 1996; Parikh et al., 1996).

Identifying the extent of limited health literacy is also problematic because individuals tend not to tell their health-care providers about lit- eracy problems that they encounter in the increasingly complex health system, including trouble understanding both printed materials and the meaning of discussions with providers. Also of concern is the possibility

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INTRODUCTION 25

that people may perceive their skills to be adequate when they are not. For example, data from the 1992 National Adult Literacy Survey (NALS) show that among those scoring in the lowest level on the prose literacy scale, only 29 percent reported they did not read well and only 34 percent reported they did not write well. The majority of those performing at this level perceive their reading and writing skills to be adequate. Among those in the next highest level the results were even more surprising, as only 3 percent said they couldn’t read well and 6 percent said they couldn’t write well (Kirsch et al., 1993; see Chapter 2 for more information on the NALS).

To Err Is Human: Building a Safer Health System is a widely publicized IOM study on the quality of health care that examined factors to medical errors (IOM, 2000). One study cited in this report found that 10 percent of adverse drug events were linked to errors in the use of the drug as a result of communication failure (Leape et al., 1993). The report noted that manage- ment of complex drug therapies, especially in elderly patients, is extremely difficult and requires special attention to the ability of the patient to under- stand and remember the amount and timing of dose, as well as behavioral modifications required by the regimen (e.g., dietary restrictions) (IOM, 2000). The ability of patients and consumers to manage their own health and medical care can be improved through better provider–patient commu- nication and greater inclusion of the patient in treatment decisions, as discussed in Chapter 6 (Hausman, 2001; Hayes-Bautista, 1976; Hulka et al., 1975, 1976; Miller, 1975; Snyder et al., 1976).

HEALTH LITERACY AS A PUBLIC CONCERN

In its report Healthy People 2010, the U.S. Department of Health and Human Services included improved consumer health literacy as Objective 11-2, and identified health literacy as an important component of health communication, medical product safety, and oral health (HHS, 2000). The importance of health literacy has also been recognized globally. The World Health Organization has included health literacy as a key factor in health promotion (WHO, 2000), and the U.S. Agency for International Develop- ment (U.S. AID) has recognized health literacy as an important contributor in the move towards a healthier society (U.S. Agency for International Development, 2001). Much of the pioneering work in health literacy arose from the fields of health education and health communication in the 1970s and 1980s (Rudd et al., 2000).

Health literacy is intimately linked to many issues of critical impor- tance to the nation and to our health policies. The public health mandate of protecting the health of the nation relies on communication strategies for issues as different as obesity and bioterrorism. Health literacy is of concern to people addressing worker health and safety, product labeling, environ-

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26 HEALTH LITERACY

mental health, patient rights and responsibilities, quality of care, or access to information, insurance, and services (Hausman, 2001; Hayes-Bautista, 1976; Hulka et al., 1975, 1976; Rudd et al., 2003; Snyder et al., 1976).

Crossing the Quality Chasm: A New Health System for the 21st Cen- tury (IOM, 2001) proposed a reorganization of the complex health system practices that decrease patient safety. The report stressed that the “patient- centered” approach should be implemented to ensure that patients have a full understanding of all of their options (IOM, 2001). Limited health literacy is often unreported by patients, unappreciated by policy makers and health-care workers, and unappreciated by the general public. Without improvements in health literacy, the promise of many scientific advances to improve health outcomes will be diminished. Consequently, the IOM has identified improving health literacy as one of two cross-cutting issues in health care needing attention in its recent report, Priority Areas for Na- tional Action: Transforming Healthcare Quality (IOM, 2003b). This report called for increased attention to culturally and socially sensitive communi- cation to improve the overall quality of health care and the health of minority and lower-income patients.

CHARGE TO THE COMMITTEE

Although a greater appreciation for the potential consequences of lim- ited health literacy has been developing over recent years, the health field has lacked a comprehensive yet concise summary of what is known about health literacy and what needs to be done. Watters (2003) suggests that an interdisciplinary literacy model that addresses health, literacy, and culture could successfully guide development, diffusion, and adoption of appropri- ate information.

In 2002 the IOM convened the Committee on Health Literacy for a project sponsored by the American Association of Family Physicians Foun- dation, the California HealthCare Foundation, the Commonwealth fund, the Kellogg Foundation, the Metlife Foundation, the National Cancer Insti- tute, the Pfizer Corporation, and the Robert Wood Johnson Foundation. Committee membership included individuals with expertise in public health, primary medical care, health communication, sociology, nursing, anthro- pology, adult literacy education, and K-12 education. As reflected by the composition of the committee, many academic fields can inform health literacy inquiries, and have contributed to our understanding of the area. The committee was carefully selected to ensure that it possessed appropri- ate expertise for assessing past efforts to promote health literacy and for providing options to overcome the obstacles to health literacy in future endeavors. Furthermore, the committee represents a balance of intellectual perspectives and experiences, ranging from practical experience in promot-

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INTRODUCTION 27

ing health literacy to research and theoretical experience in the closely related fields such as anthropology, psychology, and education. The chair brought to the study experience with health-care systems and population health determinants as well as with committee processes. For further infor- mation regarding the backgrounds of the members of the committee, the reader is directed to the short biographies presented in Appendix D. The committee was asked to assess the problem of health literacy and come to consensus on the next steps, addressing the following charge:

• Define the scope of the problem of health literacy. The intent is to clarify the root problems that underlie health illiteracy. This would include identifying affected populations and estimating the costs for society. De- velop a set of basic indicators of health literacy to allow assessment of the extent of the problem at the individual, community, and national levels.

• Identify the obstacles to a creating a health-literate public. These are likely to include the complexity of the health-care system, the many and often-contradictory health messages, rapidly advancing technologies, limits within public education to promote literacy of adults as well as children, etc.

• Assess the approaches that have been attempted to increase health literacy both in the United States and abroad. Identify the gaps in research and programs that need to be addressed. The focus should be on public health interventions attempting to increase health literacy of the public as well as on improving health provider/primary care interactions. Identify activities that could improve health literacy with special attention to Med- icaid and Medicare patients.

• Identify goals for health literacy efforts and suggest approaches for overcoming obstacles to health literacy in order to reach these goals. Ap- proaches might include research or policy initiatives, interventions, or col- laborations that would promote health literacy.

SCOPE OF THE REPORT

This report explores what is known about the epidemiology of limited health literacy and promising approaches for increasing health literacy. It offers a conceptual framework for thinking about how society, culture, and the health and education systems contribute to the problem and to possible solutions. Throughout, the report seeks to put a human face on the problem of limited health literacy. Each chapter aims to provide new directions and blend knowledge from divergent areas of inquiry. Overarching recommen- dations are presented at the end of the report.

Chapter 2 clarifies the concept of health literacy by discussing its defi- nition and delineating literacy and functional literacy within the context of

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28 HEALTH LITERACY

health. A conceptual model of health literacy is presented with a visual framework that makes clear that health literacy is a function of the interac- tion between individuals and the health contexts to which they are exposed. In addition, the committee outlines limitations to the conceptualization and measures of health literacy. By these means, the strengths and weaknesses of existing measures of literacy and health literacy are examined, with a view toward continued development of health literacy assessment, includ- ing population indicators and measures of health literacy within health systems.

Although the charge to the committee included the development of a set of basic indicators of health literacy, the committee determined that to do so within the context and limitations of the current knowledge and available measures would be premature and inappropriate. Development of population-level public health indicators cannot precede the development of adequate individual-level measures. The committee limited its findings and recommendations to suggestions that could promote the development of improved measures and new basic indicators of health literacy, rather than developing the indicators themselves. The committee hopes that future research will enable the development of these indicators.

Chapter 3 reviews the extent and associations of limited health literacy as currently measured, exploring the broad social effect of disparities be- tween health literacy needs and demands. This chapter provides insight into the relationship of the health consumer and health literacy. Current re- search related to the associations of limited health literacy is summarized, both in terms of individual health behaviors and outcomes, and in terms of the financial, legal, and regulatory consequences in health contexts. This chapter contains extensive tables on the epidemiology of health literacy skills in various populations and the characteristics and associations of limited health literacy.

Chapter 4 explores the web of culture and health literacy, and how these encompass patient perspectives and quality of care, with attention to clinical uncertainty, patient safety, and the building of health literacy into standard health care. The interrelationships among culture, language and meaning, and health literacy measures are discussed as well as culturally based approaches to improving health literacy.

Chapter 5 explores health literacy within the context of educational systems and seeks to understand the roles that K-12, university, adult, and health professional education systems can take to improve health literacy. In particular, the chapter addresses difficulties encountered by educators in the K-12 system, and explores possible approaches to improving health literacy by integrating health into curricula.

Chapter 6 discusses health literacy within the context of the health-care system, including providers, insurers, administrators, national agencies that

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INTRODUCTION 29

guide health policy, and others. Current issues facing health care are dis- cussed as they relate to health literacy. The chapter also reviews various types of approaches that may help to address the problem of limited health literacy when applied in health care settings.

Chapter 7 presents the committee’s vision for a health literate society.

REFERENCES

Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, Imara M. 1996. The health care experience of patients with low literacy. Archives of Family Medicine. 5(6): 329–334.

Barton D, Hamilton M. 1998. Local Literacies: Reading and Writing in One Community. New York: Routledge.

Carrasquillo O, Orav EJ, Brennan TA, Burstin HR. 1999. Impact of language barriers on patient satisfaction in an emergency department. Journal of General Internal Medicine. 14(2): 82–87.

Flores G, Laws MB, Mayo SJ, Zuckerman B, Abreu M, Medina L, Hardt EJ. 2003. Errors in medical interpretation and their potential clinical consequences in pediatric encounters. Pediatrics. 111(1): 6–14.

Grossman M, Kaestner R. 1997. The effects of education on health. In: The Social Benefits of Education. Behermean R, Stacey N, Editors. Ann Arbor, MI: University of Michigan Press. Pp. 69–123.

Hausman A. 2001. Taking your medicine: Relational steps to improving patient compliance. Health Marketing Quarterly. 19(2): 49–71.

Hayes-Bautista DE. 1976. Modifying the treatment: Patient compliance, patient control and medical care. Social Science & Medicine. 10(5): 233–238.

HHS (U.S. Department of Health and Human Services). 2000. Healthy People 2010: Under- standing and Improving Health. Washington, DC: U.S. Department of Health and Hu- man Services.

House JS, Lepkowski JM, Kinney AM, Mero RP, Kessler RC, Herzog AR. 1994. The social stratification of aging and health. Journal of Health & Social Behavior. 35: 213–234.

Hulka BS, Kupper LL, Cassel JC, Mayo F. 1975. Doctor-patient communication and out- comes among diabetic patients. Journal of Community Health. 1(1): 15–27.

Hulka BS, Cassel JC, Kupper LL, Burdette JA. 1976. Communication, compliance, and con- cordance between physicians and patients with prescribed medications. American Jour- nal of Public Health. 66(9): 847–853.

IOM (Institute of Medicine). 2000. To Err Is Human: Building a Safer Health System. Wash- ington, DC: National Academy Press.

IOM. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Wash- ington, DC: National Academy Press.

IOM. 2002. Speaking of Health: Assessing Health Communication Strategies for Diverse Populations. Washington, DC: The National Academies Press.

IOM. 2003a. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, Editors. Washington, DC: The National Academies Press.

IOM. 2003b. Priority Areas for National Action: Transforming Healthcare Quality. Adams K, Corrigan JM, Editors. Washington, DC: The National Academies Press.

Kirsch IS. 2001. The International Adult Literacy Survey (IALS): Understanding What Was Measured. Princeton, NJ: Educational Testing Service.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

30 HEALTH LITERACY

Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. 1993. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey (NALS). Washington, DC: National Center for Education Statistics, U.S. Department of Education.

Leape LL, Lawthers AG, Brennan TA, Johnson WG. 1993. Preventing medical injury. Qual- ity Review Bulletin. 19(5): 144–149.

Miller WD. 1975. Drug usage: Compliance of patients with instructions on medication. Jour- nal of the American Osteopathic Association. 75(4): 401–404.

Pamuk E, Makuc D, Heck K, Rueben C, Lochner K. 1998. Socioeconomic Status and Health Chartbook. Health, United States, 1998. Hyattsville, MD: National Center for Health Statistics.

Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. 1996. Shame and health literacy: The unspoken connection. Patient Education and Counseling. 27(1): 33–39.

Parker RM, Ratzan SC, Lurie N. 2003. Health literacy: A policy challenge for advancing high-quality health care. Health Affairs. 22(4): 147.

Purcell-Gates V, Degener S, Jacobson E, Soler M. 2000. Affecting Change in Literacy Prac- tices of Adult Learners: Impact of Two Dimensions of Instruction. NCSALL Report No. 17. Boston, MA: National Center for the Study of Adult Learning and Literacy.

Ratzan SC, Parker RM. 2000. Introduction. In: National Library of Medicine Current Bibli- ographies in Medicine: Health Literacy. Selden CR, Zorn M, Ratzan SC, Parker RM, Editors. NLM Pub. No. CBM 2000-1. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.

Roter DL, Rudd RE, Comings J. 1998. Patient literacy: A barrier to quality of care. Journal of General Internal Medicine. 13(12): 850–851.

Rudd, R. 2002. Health and Literacy: Recalibrating the Norm. Paper presented at the Ameri- can Public Health Association Annual Conference, Philadelphia, PA.

Rudd R, Moeykens BA, Colton TC. 2000. Health and literacy: A review of medical and public health literature. In: Annual Review of Adult Learning and Literacy. Comings J, Garners B, Smith C, Editors. New York: Jossey-Bass.

Rudd RE, DeJong W. 2000. In Plain Language: The Need for Effective Communication in Medicine and Public Health [Video]. Cambridge, MA: Harvard University.

Rudd RE, Comings JP, Hyde J. 2003. Leave no one behind: Improving health and risk communication through attention to literacy. Journal of Health Communication, Special Supplement on Bioterrorism. 8(Supplement 1): 104–115.

Sarver J, Baker DW. 2000. Effect of language barriers on follow-up appointments after an emergency department visit. Journal of General Internal Medicine. 15(4): 256–264.

Snyder D, Lynch JJ, Gruss L. 1976. Doctor-patient communications in a private family prac- tice. Journal of Family Practice. 3(3): 271–276.

Street B. 2001. Literacy and Development: Ethnographic Perspectives. New York: Routledge. U.S. Agency for International Development. 2001. DRAFT “Communication activity autho-

rization document.” Watters EK. 2003. Literacy for health: An interdisciplinary model. Journal of Transcultural

Nursing. 14(1): 48–54. WHO (World Health Organization). 2000. Health Promotion. Report by the Secretariat.

World Health Organization.

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31

2

What Is Health Literacy?

A 29-year-old African-American woman with three days of abdominal pain and fever was brought to a Baltimore emergency department by her family. After a brief evaluation she was told that she would need an exploratory laparotomy. She subsequently became agitated and demanded to have her family take her home. When approached by staff, she yelled “I came here in pain and all you want is to do is an exploratory on me! You will not make me a guinea pig!” She refused to consent to any procedures and later died of appendicitis.

DEFINITION OF HEALTH LITERACY

Health literacy is of concern to everyone involved in health promotion and protection, disease prevention and early screening, health care and maintenance, and policy making. Health literacy skills are needed for dia- logue and discussion, reading health information, interpreting charts, mak- ing decisions about participating in research studies, using medical tools for personal or familial health care—such as a peak flow meter or thermom- eter—calculating timing or dosage of medicine, or voting on health or environmental issues. This report makes use of the operational definition of health literacy developed for the National Library of Medicine and used by Healthy People 2010:

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32 HEALTH LITERACY

The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appro- priate health decisions (Ratzan and Parker, 2000).

The capacity of the individual is a substantial contributor to health literacy. The term “capacity” refers to both the innate potential of the individual, as well as his or her skills. An individual’s health literacy capac- ity is mediated by education, and its adequacy is affected by culture, lan- guage, and the characteristics of health-related settings. In this report, the committee has captured the range of environments and situations related to health in the term “health context”. The health context includes the media, the marketplace, and government agencies, as well as those individuals and materials a person interacts with regarding health—all must be able to provide basic health information in an appropriate manner (Rudd, 2003). This health context is of equal importance to individuals’ health literacy skills, as the impact of health literacy arises from the interaction of the individual and the health context (Rudd, 2003; Rudd et al., 2003). Health literacy, then, is a shared function of cultural, social, and individual factors. Both the causes and the remedies for limited health literacy rest with our cultural and social framework, the health and education systems that serve it, and the interactions between these factors.

A Conceptual Framework for Health Literacy

Figures 2-1 and 2-2 provide visual frameworks for considering health literacy. Figure 2-1 places literacy as the foundation of health literacy and health literacy as the active mediator between individuals and health con- texts. Individuals bring specific sets of factors to the health context, includ- ing cognitive abilities, social skills, emotional state, and physical conditions such as visual and auditory acuity. Literacy provides the skills that enable individuals to understand and communicate health information and con- cerns. Literacy is defined as a set of reading, writing, basic mathematics, speech, and speech comprehension skills (Kirsch, 2001a). Health literacy is the bridge between the literacy (and other) skills and abilities of the indi- vidual and the health context. This interaction is explored in Chapter 3, where associations between health literacy and health-related outcomes are discussed in detail.

Figure 2-2 illustrates the three key sectors that should assume responsi- bility for health literacy, and within which health literacy skills can be built. The sectors that constitute the contexts of health literacy are culture and society, the health system, and the education system. These sectors also provide intervention points that are both challenges and opportunities for improving health literacy.

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FIGURE 2-1 Health literacy framework.

Health Literacy

Health Contexts

Individuals

Health Outcomes and Costs

Literacy

Health Literacy Framework

Figure 2-2 illustrates the interaction of individuals with education sys- tems, health systems, and societal factors as they relate to health literacy. It is not a causal model. It is likely that the determinants of health literacy are as varied and complex as those of the most refractory problems now facing the health fields. Although causal relationships between limited health lit- eracy and health outcomes are not yet established, cumulative and consis- tent findings suggest such a causal connection. Research is needed to estab- lish the nature of the causal relationships between and among these factors. Mapping this web of causation should be a goal of research, but it is important to note that current knowledge can serve as the basis for chang- ing practice and policy. Below, we introduce the role each of the sectors plays in supporting or impairing health literacy. The opportunities for and obstacles to health literacy in these three sectors will be discussed in detail in Chapters 4, 5, and 6.

Culture and Society

The term “culture” in this report primarily refers to the shared ideas, meanings, and values acquired by individuals as members of society. Cul- tural, social, and family influences are of critical importance in shaping attitudes and beliefs. In this way, they influence how people interact with the health system and help determine the adequacy of health literacy skills in different settings. People know humanity, deal with the world they live in, and understand their place in the universe through cultural processes. Conditions over which the individual has little or no control but which

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34 HEALTH LITERACY

affect the ability to participate fully in a health-literate society comprise social determinants of health. Included are native language, socioeconomic status, gender, race, and ethnicity, along with influences of mass media as represented by news publishing, advertising, marketing, and the plethora of health information sources available through electronic sources. Culture is crucial for understanding, thinking, and responding to human experiences and world events. American culture is formed from historical, racial-ethnic, social, political, psychological, educational, and economic forces that are woven into the context of American lifestyles. Because they are pathways to understanding American life, cultural contexts should be harnessed in the quest for a health-literate America.

The Education System

The education system in the United States consists of the K-12 system, adult education programs, and higher education. K-12 education is charged with the development of literacy and numeracy skills in English, which cumulatively form the foundation for more complex skills involving com- prehension and application in the later grades. Adult education programs

FIGURE 2-2 Potential points for intervention in the health literacy framework.

Health Outcomes and Costs

Potential Intervention Points

Health Literacy

Education System

Health System

3

2

Culture and

Society

1

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WHAT IS HEALTH LITERACY? 35

provide opportunities for individuals who drop out of K-12 education for academic or social reasons, for those who completed high school but did not acquire strong skills, for elders who did not have full schooling oppor- tunities, and for adult immigrants who may never have had access to educa- tion and/or wish to learn to speak, read, and write English. Individuals with college-level education or higher frequently have adequate literacy skills, and generally are not discussed in this report. Formative and continuing education for health professionals is also considered within the context of education.

The Health System

Within the many components of health-care systems, health-related messages and action plans are crafted, rights and responsibilities are shaped, research initiatives are begun, health-promoting recommendations are de- veloped and supported, access is monitored, and regulations are enforced. In this report, we use the term health system to refer to all people perform- ing these activities, including those working in hospitals, clinics, physician’s offices, home health care, public health agencies, accreditation groups, regu- latory agencies, and insurers. Published reviews of the literature (for ex- ample, see Kerka, 2000; Rudd et al., 2000) and the committees research into the literature from a range of related fields, including health communi- cation and social marketing, provide consistent evidence supporting the notion that health literacy affects the interaction of individuals with health contexts and the health-care system, and may further affect health status and outcomes.

Finding 2-1 Literature from a variety of disciplines is consistent in finding that there is strong support for the committee’s conclusion that health literacy as defined in this report is based on the interaction of indi- viduals’ skills with health contexts, the health-care system, the education system, and broad social and cultural factors at home, at work, and in the community. The committee concurs that responsibility for health literacy improvement must be shared by these various sectors. The committee notes that the health system does carry significant but not sole opportunity and responsibility to improve health literacy.

Finding 2-2 The links between education and health outcomes are strongly established. The committee concludes that health literacy may be one pathway explaining the well-established link between education and health, and warrants further exploration.

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36 HEALTH LITERACY

The Scope of Health Literacy

If people who promote health care, create policy, and develop health materials have a clear understanding of the problem of health literacy, procedures, policies, and programs can be developed to meet the health literacy needs of the average American adult. A clear understanding of health literacy can guide the health system of public health practitioners, care providers, insurers, and community agencies toward adopting defini- tions and policies that resolve incompatibilities between the needs of indi- viduals and the demands of health systems. The committee believes that both a commonly accepted definition and a conceptual framework will contribute to the clear understanding of health literacy. In choosing the definition and developing the framework in this report the committee exam- ined the existing definitions and concepts of health literacy. The committee believes the definition and framework in this report incorporate aspects essential to the understanding of health literacy, and allow for a flexibility of response within the framework of a widely accepted definition.

Health literacy is a newly emerging concept and field of inquiry, so it is not surprising that the scope of health literacy varies according to how it is defined. For example, in 1999, the Ad Hoc Committee on Health Literacy of the American Medical Association defined health literacy as the “con- stellation of skills, including the ability to perform basic reading and nu- merical tasks required to function in the health care environment,” and included everyday health functions such as the “ability to read and compre- hend prescription bottles, appointment slips, and other essential health- related materials” (American Medical Association, 1999). This definition captures important components of health care, but confines the scope of health literacy to the health-care sector. This committee extends the con- cept of health literacy beyond health-care settings to include the variety of contexts (such as in the community and at work) in which individuals make health-related decisions.

Another concept of health literacy is found in the definition used by the Joint Committee on National Health Education Standards: “the capacity of individuals to obtain, interpret and understand basic health information and services and the competence to use such information and services in ways which enhance health” (Joint Committee on National Health Educa- tion Standards, 1995). This definition does move beyond the health-care setting; however, this and similar definitions (e.g., Kickbusch, 1997) main- tain a focus on the capacity of individuals and emphasize the characteris- tics, knowledge, and skills of individuals without attention to the complex- ity of various health contexts, the tasks involved, or the materials in use.

The committee chose to adopt the definition used in Healthy People 2010 for purposes of measurement and clarity in this report. As previously

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WHAT IS HEALTH LITERACY? 37

noted, Healthy People 2010, the document that reports the federal govern- ment’s national health objectives, defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (HHS, 2000; Ratzan and Parker, 2000). This definition is useful because it encompasses the variety of contexts within which individuals may confront and interact with health issues. As with a number of the other definitions discussed above, however, it focuses attention on and appears to limit the problem of health literacy to the capacity and competence of the individual. This limitation is acknowledged and addressed in the action plan for the Healthy People 2010 health literacy objective, which expands the definition to include system-level contributions (Rudd, 2003). Recog- nizing the limitations of this definition, the committee acknowledges the need for future development of definitions and measures that address the critical role that society, the health system, and the education system play in creating a truly health-literate America.

DEFINITION OF LITERACY

Educators do not associate literacy with reading alone, but often con- sider literacy to represent a constellation of skills including reading, writ- ing, basic mathematical calculations, and speech and speech comprehension skills (Kirsch, 2001a). Speech and speech comprehension are collectively termed oral literacy, while reading and writing are referred to as print literacy. For our discussion in this report, we further differentiate among the following terms: basic print literacy, literacy for different types of text, and functional literacy. Basic print literacy ability means the ability to read, write, and understand written language that is familiar and for which one has the requisite amount of background knowledge. Reading or text lit- eracy is related to characteristics of the text being read such as complexity and format. Functional literacy is the use of literacy in order to perform a particular task. We note that health literacy has been variously defined, but as currently used and measured, often consists of reading or text literacy (see below for further discussion). Figure 2-3 below illustrates the relation- ships between the different contributors to literacy.

As illustrated above in Figure 2-3, a consideration of health literacy must include component parts directly related to the broad concept of literacy. Literacy, as noted earlier, is context specific. For example, literacy could be placed within the multiple health contexts noted earlier. In this case, the construct includes cultural and conceptual knowledge that could include an understanding of health and illness and a conceptualization of risks and benefits. Listening and speaking skills are essential for public health communication, the commercial sector’s advertising goals, and for

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38 HEALTH LITERACY

practitioner–patient interactions, such as for the presentation of symptoms critically needed for diagnosis. Writing and reading skills, often called print literacy, are needed for tasks related to the use of the printed word, whether the words are found on labels in the market, in health education brochures, on medicine bottles or in informed consent documents. Numeracy skills are needed to calculate nutrition labels, calibrate temperature, and compare benefit packages, and for determining the proper dosage and timing of medicines. The committee recognizes that these skills are essential compo- nents of health literacy. However, most literature focused on health literacy issues has focused predominantly on assessments of materials and on mea- sures of people’s skills based on their ability to read a sample of these materials. Thus, print literacy has dominated the discussion in health lit- eracy so far. At the same time, the focus on print literacy has yielded profound insights into difficulties and barriers linking literacy skills to health outcomes.

Finding 2-3 Health literacy, as defined in this report, includes a vari- ety of skills beyond reading and writing, including numeracy, listening, and speaking, and relies on cultural and conceptual knowledge.

Basic Print Literacy

As mentioned earlier, basic print literacy ability means the ability to read, write, and understand written language that is familiar and for which

FIGURE 2-3 Components of literacy.

Contexts

Listening Speaking Writing Reading Numeracy

Oral Literacy

Print Literacy

Cultural and Conceptual Knowledge

Literacy

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WHAT IS HEALTH LITERACY? 39

one has the requisite amount of background knowledge. It includes the ability to decode letters and sound out words, but also includes the ability to understand the meaning of the printed text. Some people with limited skills may know how to decode letters into sounds and pronounce words but may not be able to understand the meaning of a sentence formed by these words. However, as many new readers build on these skills, they learn how to read words in sentence sequence and accumulate levels of fluency for reading and writing. Fluency in reading includes accuracy, rate, and appropriate phrasing and intonation. Fluent reading “sounds” natural rather than halting and effortful. Basic print literacy is what is referred to when someone inquires, “can he read?” People who are termed “illiterate” have few, if any, of the skills needed for basic print literacy. The terms “low literate” or “limited” reading skills refer to difficulty with reading and comprehending materials written beyond very simple levels.

Literacy for Different Types of Text

Possessing the skills needed for basic literacy does not guarantee that one can read and comprehend all types of written text. Readers must know and understand the individual words and terms used in the text and be familiar with the concepts addressed in the text. They must understand how to “read” the structure of the text. For example, a prescription label has a unique structure and the reader must be able to use that structure to under- stand the directions that follow. The reader may be helped or hindered by various text features such as font size, layout and design, syntax, or use of graphs. Not all texts are equally readable and comprehensible to every person, regardless of that person’s reading ability. The same literate person who can read the daily newspaper, the Bible, novels, or a manual at work may not be able to figure out instructions for connecting a DVD player to a television, directions for taking medicine, a blueprint for a new skyscraper, or the bias in an editorial. Thus, the readability of different texts depends on the skills and background knowledge of individual readers, factors in the text, and the purpose for which readers use the materials.

All Literacy is Functional

Texts serve specific functions, and readers come to them in order to accomplish specific tasks. At times, the task at hand may be clear; for example, a person is most likely to read a bus schedule in order to deter- mine when the bus is arriving at a certain place. In other cases, the task may be less clear; a person is most likely to read a novel for pleasure. In both examples, however, the person is applying literacy skills to perform a function.

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The content and structure of a bus schedule is meant to be a reflection of the function it serves to help a traveler plan an excursion. A bus schedule generally lists the routes and stops of different buses—often identified with numbers—for people who need to plan their transportation and arrive at a particular destination at a specific time. More complicated schedules in- clude variations based on days of the week or holiday exceptions. Similarly, the content and structure of a label on a pediatric over-the-counter medi- cine is designed to provide the parent with information about the medicine and a mechanism for calculating the appropriate dose based on the child’s age and weight. This information is often present in a table format that requires special reading skills that many people do not have.

An individual’s ability to apply his or her literacy skills changes with the challenges of the task (Kirsch, 2001b; Kirsch et al., 1993). The example below, the text of an actual letter sent by a doctor to a patient, captures a very complicated message. Although the patient in this case holds a gradu- ate degree, his anxiety was greatly increased as a result of a confusing message. He asked, “How can I have a recurrence of thyroid cancer if my thyroid was removed?”

Dear Mr. Smith,

The May thyroid tests showed TSH 2.794 µU/ml, which, though “normal,” is too high for someone who has had prior thyroid carcinoma. Keeping TSH between 0.1 – 0.3 µU/ml minimizes recurrence of thyroid cancer. Free T4 1.60 mg% is a high-normal level.

I suggest you increase L-thyroxine from 150 mcg 7 days a week to 150 mcg 5 days a week and 225 mcg (11⁄2 tablets) Wednesdays and Sundays weekly. Have a repeat TSH, free T4 and total T3 in 8 weeks. I should also on that occasion like you to have a serum plasma metanephrine level.

Two weeks after having those tests, please see me for a consultative office visit.

Sincerely yours, John Doe, M.D. Endocrinology

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WHAT IS HEALTH LITERACY? 41

LITERACY IN HEALTH CONTEXTS

Health-related activities take place in a wide variety of settings (home, work, community health-care institutions) and can involve a wide range of activities related to family, community, economics, leisure, and safety is- sues. The parent taking a child’s temperature, the worker reading about proper procedures for handling materials, the shopper calculating the dif- ference in salt content on the labels of two brands of canned vegetables, the patient reading about dental options, and the elder filling out an applica- tion for Medicare are all engaged in health-related tasks, in different envi- ronments, for different purposes, and with different types of materials. All are applying literacy skills to printed health information.

This report uses the term “health contexts” to reflect the many situa- tions and activities relating to health. Health contexts are unusual, com- pared to other contexts, because of an ever-present or underlying stress or fear factor. Various exposures, products, or actions might enhance health, safeguard health, harm health, or lead to very dire consequences. In addi- tion, health-care settings can involve unique conditions such as the physical or mental impairment experienced by a patient due to illness, stress, or fear (Alexander, 1990; Dumas, 1966). Health-care settings also involve special- ized vocabulary, use of jargon, legal forms, complex procedures and pro- cesses, as well as differences in power and access to information.

Literacy Skill Demands of Health Contexts

A complex array of health literacy skills are needed for functioning in a variety of health contexts. These skills include reading, writing, mathemat- ics, speaking, listening, using technology, networking, and rhetorical skills associated with requests, advocacy, and complaints. Table 2-1 presents some brief (and incomplete) examples to provide a sense of the complexity of skills needed for health.

While many of the examples presented in Table 2-1 emphasize the skills of individuals, the skills of those communicating also contribute to health literacy. We must consider a health-care provider’s ability to use common words and to perceive whether a patient is understanding a discussion or not. A media developer needs the skills to shape a message that consumers can understand. Manufacturers need skills to design clear product labels. Educators need skills to engage students in health-related issues and to incorporate health messages into science, language, and math curricular materials. The example below represents the level of confusion created by a lack of clear information, even for the most educated consumer.

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42 HEALTH LITERACY

TABLE 2-1 Examples of Skills Needed for Health

Health-Related Goal Sample Tasks and Skills Needed

Promote and protect • read and follow guidelines for physical activity health and prevent • read, comprehend, and make decisions based on food and disease product labels

• make sense of air quality reports and modify behavior as needed

• find health information on the internet or in periodicals and books

Understand, interpret, • analyze risk factors in advertisements for prescription and analyze health medicines information • determine health implications of a newspaper article on

air quality • determine which health web sites contain accurate

information and which do not • understand the implications of health-related initiatives in

order to vote

Apply health • determine and adopt guidelines for increased physical information over a activity at an older age variety of life events • read and apply health information regarding childcare or and situations eldercare

• read and interpret safety precautions at work; choose a health-care plan

Navigate the health- • fill out health insurance enrollment or reimbursement care system forms

• understand printed patient rights and responsibilities • find one’s way in a complicated environment such as a

busy hospital or clinical center

Actively participate in • ask for clarification encounters with health- • ask questions care professionals and • make appropriate decisions based on information workers received

• work as a partner with care providers to discuss and develop an appropriate regimen to manage a chronic disease

Understand and give • comprehend required informed consent documents before consent procedures or for involvement in research studies

Understand and • advocate for safety equipment based on worker right-to- advocate for rights know information

• request access to information based on patient rights documents

• determine use of medical records based on the privacy act • advocate on behalf of others such as the elderly or

mentally ill to obtain needed care and services

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WHAT IS HEALTH LITERACY? 43

A highly publicized, large-scale study of combination estrogen-progestin hormone therapy by the Women’s Health Initiative came to a sudden end in the summer of 2002 when researchers noticed higher levels of heart disease, blood clots and breast cancer in the group taking hormones.

According to Wyeth spokeswoman Natalie DeVane, 15 million American women were taking some form of hormone treatment before the study was stopped. This past June, she said, the number was 9.2 million.

Rep. Rosa L. DeLauro (D-Conn.) led the effort to mandate an FDA education effort on hormone therapies. “I’m pretty well-informed about these things, and I didn’t know what to do,” she said. “In the absence of clear information, it can get pretty scary for women.” (Kaufman, 2003)

MEASURES USED IN HEALTH LITERACY RESEARCH

Measures of literacy are needed to allow us to assess people’s literacy competence and to suggest promising intervention points and strategies. However, we must recognize that assessment of literacy ability (as for any assessment) depends on how literacy is defined and how assessment results are to be used. Literacy assessment has evolved over the years and takes several different forms, resulting in the necessity to interpret and use the results accordingly.

Literacy Surveys

Assessments of adult literacy conducted since the late 1980s have fo- cused on functional literacy and numeracy as outlined by the National Literacy Act of 1991.1 This act defines literacy as “the ability to read, write, and speak in English, and compute and solve problems at levels of profi- ciency necessary to function on the job and in society, to achieve one’s goals, and develop one’s knowledge and potential.” This definition was applied to the development of the national assessments of adult literacy in the United States and other industrialized nations. The surveys measured three of the five accepted components of literacy: reading, writing, and mathematical calculations (or numeracy). Oral language skills, including speaking and listening, were not assessed for the national studies, in part because of time constraints and a possible burden on participants (Kirsch,

1P.L. 102-73, The National Literacy Act of 1991. 102nd Congress, 1st Session. H.R. 751.

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2001a). The Young Adult Literacy Survey (performed in 1985) (Kirsch and Jungeblut, 1986), the Department of Labor Survey (1990) (Kirsch and Jungeblut, 1992), the National Adult Literacy Survey (NALS) (1992) (Campbell et al., 1992), and the International Adult Literacy Survey (IALS) (the initial study was performed in 1994–1998) (Kirsch, 2001a) all focus on the ability to use print materials to accomplish a task. These task-oriented assessments differ in complexity from basic literacy assessments that focus on the ability to recognize or pronounce words, or to read and comprehend text written specifically for test purposes.

Materials for these surveys were drawn from six contexts in order to represent literacy tasks from everyday life: home and family, health and safety, community and citizenship, consumer economics, work, and leisure and recreation. Materials included both continuous and noncontinuous texts. Continuous texts or prose, which is the term used in these large-scale assessments, are typically composed of sentences that are, in turn, orga- nized into paragraphs. These paragraphs are used to form larger structures such as stories, newspaper or magazine articles, and even sections or chap- ters in a book. A common way of organizing continuous texts is by their rhetorical structure. These might include: narratives, exposition, descrip- tion, argumentation, instructions, or a document and record. Noncontinu- ous texts or documents as they are referred to involve the display of infor- mation using other structures or formats. These might include tables, charts, graphs, entry forms, maps, and diagrams. They have been described by Mosenthal and Kirsch (1998) and Kirsch (2001b). These materials range in both length and complexity. Some prose materials are very short such as a brief sports article or letter. Others are more lengthy and complex such as an editorial. Documents, too, range in length and complexity such as a social security card on which someone has to enter their signature to a complex table showing the results of a survey or an embedded bus schedule.

NALS scores were based on people’s ability to accomplish tasks using printed texts. The difficulty of each task was related to three variables: type of match, type of information, and plausibility of distracting information (Kirsch, 2001a). Four types of matching strategies were identified: locating, cycling, integrating, and generating.

The tasks, in ascending order of difficulty, included:

• Locating—requires the reader to find information based on condi- tions or features specified in the text or document.

• Cycling—requires the reader to engage in a series of matching or locating operations that involve the strategy of locating.

• Integrating—requires the reader to pull together pieces of informa- tion from a text or document often times having to compare or contrast this information.

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• Generating—requires the reader to produce a response either by making a text-based inference or by drawing on their background knowl- edge.

• Formulating and Calculating—requires the reader to identify both the numbers or quantities and the operation that must be performed. If more than one operation is required, the reader must determine the appro- priate order of the operations.

Tasks were further identified by specific characteristics: type of match, type of information requested, plausibility of distracters, type of calcula- tion, and operation specificity. Detailed discussions of how these factors contributed to scoring may be found in the International Adult Literacy Survey: Understanding What Was Measured (Kirsch, 2001b).

Findings reported participants’ ability to complete these tasks with 80 percent accuracy and consistency for three types of literacy: prose (tasks involving materials using full sentences in paragraph format), document (tasks involving materials consisting of lists, graphs, and charts), and numer- acy (quantitative literacy; tasks involving the application of basic math- ematical processes). Assessments were scored on a 0 to 500 scale and findings were reported by score for various population groups and by levels:

• Level 1 (score of 0 to 225): Many adults at this level can perform tasks involving brief and uncomplicated texts and documents. Adults at this level can generally locate a piece of information in a news story or on a form such as a social security card.

• Level 2 (score of 226 to 275): Adults at this level of proficiency are generally able to locate information in text, make low-level inferences using printed materials, and integrate easily identifiable pieces of information.

• Level 3 (score of 276 to 325): Adults at this level are able to integrate information from relatively long or dense texts or documents, determine appropriate arithmetic operations based on information con- tained in the directive, and identify quantities needed to perform the opera- tion.

• Levels 4 (score of 326 to 375) and 5 (score of 376 to 500): Adults at these levels demonstrate proficiencies associated with long and complex documents and text passages.

Grade-Level Measures of Literacy

One of the most familiar terms associated with the assessment of read- ing levels is that of grade level. This term is used in two different ways. First, individual scores on assessments of reading achievement are often

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46 HEALTH LITERACY

reported in terms of grade level, for example, He scored a Grade Equivalent (GE) of 5.2. The second way that grade level is used is to indicate the readability level of a text, for example, the story was written at a fifth grade level. The two uses of the term grade level, while related, do not mean the same thing. The first refers to a norm-referenced score on a norm-refer- enced reading achievement test and applies to individuals. The second is the result of applying a formula for reading ease to written materials and applies to texts.

Grade-Level Ability for Individual Readers

Within the area of assessment and psychometrics, the construct of grade level indicates relative placement of an individual or group score on a norm-referenced test, that is, a test designed so that an individual’s score can be established by comparison to the test scores of a representative sample of persons. Grade level is one type of transformed score. Others include percentiles, stanines, and standard scores. While these other trans- formed scores indicate specific locations on a bell-shaped normal curve of scores of a sample of previously tested individuals (the norm sample), grade- level scores do not, and therefore the potential for their misinterpretation is higher. Statistically, the grade-level score is derived from the mean score on a norm-referenced test. This means that the average raw score on a norm- reference achievement test for a given grade is transformed into the grade- level score for that grade. For example, if the average score attained by fifth graders in the norm sample on a norm-referenced reading achievement test, taken in the second month of fifth grade, is 75 (out of, say 100), then the score of 75 will be assigned a grade-level score of 5.2 (fifth year, second month). Therefore, one can say with accuracy that a student who scores on grade level is achieving, according to this test, on average. All other scores, both lower and higher, on this test are transformed into grade-level scores through a process of mathematical extrapolation. Thus, a grade-level score (GE; grade equivalency) of 3.5 for a fifth grader on this test indicates a certain distance below the average score; a GE of 7.2 correspondingly indicates a certain distance above the average score. The appropriate inter- pretation of the on-grade-level, or average, score is as a measure of the student’s ability to read material at his or her current grade level. Above- and below-grade-level scores are less reliable due to the extrapolation in- volved. This is due to their extrapolation from raw scores.

Studies that examined the reading ability of the intended audience, performed in the 1980s and early 1990s, frequently assessed reading ability with short-word recognition tests, Cloze tests (in which random words from a passage are deleted; Taylor, 1953), or other reading comprehension tests. These types of assessments of literacy typically result in the assign-

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WHAT IS HEALTH LITERACY? 47

ment of a grade-level score, and are frequently used by adult educators to place adult students in appropriate level classes. One of these assessments, the reading recognition subtest of the Wide Range Achievement Test- Revised (WRAT-R) requires participants to read aloud lists of words that become increasingly difficult. The test is stopped when 10 words have been consecutively mispronounced (Jastak and Wilkinson, 1984). The Instru- ment for Diagnosis of Reading, also known as the Instrumento Para Diag- nostical Lecturas (IDL), is another test commonly used to assess reading ability. Although the IDL is lengthy, taking more than 20 minutes to ad- minister, it is useful because it was developed in the Spanish language and provides a comprehensive assessment of reading comprehension in Spanish (Blanchard et al., 1989). A shortened form is available that takes about 7 minutes to administer.

Grade-Level Measures of Materials

Well over 300 articles in public health and medical journals focus on the assessment of various types of health-related materials (Roter et al., 2001; Rudd, 2003; Rudd et al., 2000). Many researchers used readability score to indicate text complexity. A commonly used formula for readability score is the Simplified Measure of Gobbledygook (SMOG) which is based on calculations of the number of polysyllabic words in a set number of sentences. Consequently, the SMOG focuses on sentence and word length, both of which are associated with reading ease or difficulty (McLaughlin, 1969). Other commonly used assessment measures include the Fry Read- ability Scale (Fry, 1977) and the Flesch-Kincaid Reading Grade Level (Flesch, 1974). Measures of reading levels probably required to understand different materials have contributed to the research agenda in health lit- eracy by providing initial indications of text complexity, based on words and sentence length. These determinations of reading level are valuable when considered in light of the audiences for the material.

Measures of Health Literacy

Assessments of print literacy in the context of health were initially developed in the 1990s. Two frequently used assessments that have been described in detail are the Rapid Estimate of Adult Literacy in Medicine (REALM; Davis et al., 1993) and the Test of Functional Health Literacy in Adults (TOFHLA; Parker et al., 1995).

The REALM is a medical-word recognition and pronunciation test for screening adult reading ability in medical settings. It can be administered and scored in under 3 minutes by personnel with minimal training, making it easy to use in clinical settings. Participants read from a list of 66 com-

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48 HEALTH LITERACY

mon medical terms that patients may be expected to be able to read in order to participate effectively in their own health care. The words are arranged in three columns according to the number of syllables and pro- nunciation difficulty. Each correctly read and pronounced word increases the participant’s score by 1. Scores (0–66 words read and pronounced correctly) can be converted into four reading grade levels: grades 0–3 (0– 18 words), grades 4–6 (19–44 words), grades 7–8 (45–60 words), and grade 9 and above (61–66 words). The REALM’s criterion validity is es- tablished through correlation with other standardized reading tests: Pea- body Individual Achievement Test-Revised, 0.97 (Markwardt, 1989), Slos- son Oral Reading Test-Revised, 0.96 (Slosson, 1990), and WRAT-R, 0.88 (Davis et al., 1993, 1998; all correlations p < 0.0001). The REALM also reports high intra-subject reliability (0.97). The REALM has been devel- oped in English only. A Spanish-language version is not possible because reading tests based on pronunciation are not valid in Spanish. This is due to the regular phoneme–grapheme correspondence of Spanish, in which there is usually a one-to-one correspondence between letters and sounds, making it relatively easy to pronounce unfamiliar words even for readers with limited literacy skills (Nurss et al., 1995).

The TOFHLA includes a 17-item test of numerical ability and a 50- item test of reading comprehension, as measured by a Cloze procedure (see Appendix C for examples of items from the TOFHLA). The TOFHLA draws on materials commonly used in health-care settings at the time the test was developed. Reading passages were selected from instructions for preparation for an upper gastrointestinal series, the patient “Rights and Responsibilities” section of a Medicaid application, and a standard in- formed consent form. The numeracy items on the TOFHLA test a patient’s ability to understand monitoring blood glucose, keep a clinic appointment, obtain financial assistance, and understand directions for taking medicines using an actual pill bottle.

Total scores for the TOFHLA are divided into three criterion levels: inadequate, marginal, and adequate. Those with inadequate health literacy scores often misread medication dosing instruction, appointment slips, and instructions for the upper gastrointestinal tract radiographic procedure. Those with marginal health literacy scores perform better on those tasks, but often misread information on prescription bottles and have trouble understanding the Medicaid “Rights and Responsibilities” passage. Those who score in the adequate range do well on these tasks, but may have some difficulty comprehending the more difficult tasks like determining financial eligibility and the informed consent document (Parker et al., 1995). The TOFHLA takes up to 22 minutes to administer and has good criterion validity, with correlation coefficients of r = 0.74 with the WRAT-R and r =

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WHAT IS HEALTH LITERACY? 49

0.84 with the REALM, and a high reliability (Cronbach’s alpha = 0.98; Parker et al., 1995).

For time considerations, the TOFHLA was reduced to an abbreviated version called the S-TOFHLA that takes 12 minutes or less to administer (Baker et al., 1999). It consists of a reading comprehension section contain- ing a 36-item test using the initial two passages in the reading comprehen- sion section of the full TOFHLA—instructions for preparation for an upper gastrointestinal series and the patient “Rights and Responsibilities” section of a Medicaid application. It also contains a shortened 4-item measure of numeracy. The S-TOFHLA has been shown to have good internal consis- tency reliability (Cronbach’s alpha = 0.98 for all items combined) and concurrent validity compared to the long version of the TOFHLA (r = 0.91) and the REALM (r = 0.80). Both the TOFHLA and the S-TOFHLA are available in English and in Spanish. The Spanish and English versions were developed simultaneously and use the same standard of measurement.

Additional measures continue to be developed, including a measure of health literacy in Veterans Administration hospital populations based on the S-TOFHLA (Chew and Bradley, 2003), a literacy test for patients with diabetes (Nath et al., 2001), and a functional test of ability to maintain a medication regimen (Edelberg et al., 1998, 1999, 2001).

The use of these tests of literacy for printed material in the health context has enabled medical researchers to explore differences among vari- ous health-related outcomes for patients based on approximations of pa- tients’ health literacy as indicated by patients’ reading skills for health materials. As a result, a growing body of research has shown that limited reading and/or numeracy skills reduce access to health information and preventive services, reduce understanding of illness and disease, regimens and medications, and increase outcomes such as hospitalization or decrease outcomes such as disease management markers. This research is discussed in detail in Chapter 3.

Limitations of Existing Measures

Functional Literacy Measures

Education scholars consider literacy a changing set of skills, knowl- edge, and strategies that adults build throughout their lives. As noted ear- lier, this set of skills includes reading, writing, speaking, listening, and numeracy (Kirsch, 2001b). However, available assessments of adult literacy (NALS, IALS, National Assessment of Adult Literacy [NAAL]) do not fully measure all these aspects of literacy because measurements of oral literacy skills (including speech and speech comprehension) were considered be-

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50 HEALTH LITERACY

yond the scope of what was feasible at the time these surveys were carried out.

Oral language skills are of critical concern for public health and health care. Public health and risk communication rely on a variety of channels and media, including oral communication, to convey health promotion and protection information, as well as for local and national alerts. Health-care encounters rely on a dialogue between patient and provider that allow the provider to understand symptoms, follow the course of an illness or disease as experienced by the patient, and provide diagnosis and treatment options. Patients are expected to tell their stories, describe their experiences, provide explanations, and obtain help with needed action. Given the importance of speech and speech comprehension skills to health literacy, the current mea- sures of health literacy that are modeled on previous functional literacy assessment tools do not tap the full scope of health literacy.

Grade-Level Scores

Grade-level scores are problematic because they require an interpreta- tion of assessments for the level of ability for individual readers. The use of grade level as a meaningful norm-referenced score is so problematic that the International Reading Association recommended that it not be used for K- 12 (Joint Task Force on Assessment, 1994). Its use in adults for whom there are no “grades” from which to extrapolate from a mean score on a norm- referenced test is even more inaccurate.

Health Literacy Measures

Although useful for assessment in clinical and community settings, from a psychometric perspective neither the REALM nor the TOFHLA capture the full complexity of the construct of health literacy. They are both measures of basic print literacy using health-related terms, and to some degree, texts. To this degree, they provide a valid picture of basic print literacy ability within health contexts. While the TOFHLA also includes a measure of numeracy, a full range of text types are not included. However, health literacy includes more than word recognition, text comprehension, and numeracy skills. Furthermore, health tasks are not limited to the health- care system but instead comprise a broad spectrum of activities in a variety of contexts. Therefore, we do not yet possess a measure that takes into account the full set of skills and knowledge associated with health literacy as defined in this report. The results of such measures as the REALM and the TOFHLA must be interpreted in this light.

The TOFHLA includes passages with readability levels on the Gunning Fog index of grades 4.3, 10.4, and 19.5. However, the TOFHLA, unlike the NALS, did not examine the complexity of the materials or the difficulty of

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WHAT IS HEALTH LITERACY? 51

tasks involved in the use of the materials. Although both the TOFHLA and the S-TOFHLA include numeracy tasks, the REALM does not examine numeracy, and none of these assessments examine writing. The contents of the REALM and the TOFHLA focus on medical terms or materials found in medical settings and do not represent the broad spectrum of health literacy materials and processes that occur outside the clinical setting, limiting the conclusions that can be drawn. As discussed above, neither considers oral language skills.

Researchers using existing measures of health literacy have been able to establish differences in health-related outcome measures for patients based on differences in test scores. While the existing measures do not fully capture the construct of health literacy, they have provided information about vulnerable populations. Although the existing body of research is revealing and suggestive, generalization of results to large populations is limited. Each study focuses on a specific population, which differs from others along relevant dimensions such as age, socioeconomic status, eth- nicity, and primary languages. Also many studies use different measure- ment tools and in some cases the researchers modified the scoring of these tools. Better measures are needed if we are to be able to align our under- standing of the distribution of health literacy with the development of intervention strategies.

Finding 2-4 While health literacy measures in current use have spurred research initiatives and yield valuable insights, they are indicators of read- ing skills (word recognition or reading comprehension and numeracy), rather than measures of the full range of skills needed for health literacy (cultural and conceptual knowledge, listening, speaking, numeracy, writing and reading). Current assessment tools and research findings cannot differ- entiate among (1) reading ability, (2) lack of background knowledge in health-related domains, such as biology, (3) lack of familiarity with lan- guage and types of materials, and (4) cultural differences in approaches to health and health care. In addition, no current measures of health literacy include oral communication skills or writing skills and none measure the health literacy demands on individuals within different health contexts.

NEEDS AND OPPORTUNITIES

Links between socioeconomic status and health outcomes are well es- tablished (Adler et al., 1999; Berkman and Kawachi, 2000; Pamuk et al., 1998; Williams, 1990). Socioeconomic status is generally measured by in- come, educational attainment, and occupation. Epidemiological studies in- dicate a strong inverse relationship between health and education. Inci- dence rates of chronic diseases, communicable diseases, and injuries are all

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52 HEALTH LITERACY

inversely related to education, as are disease prevention actions (Pamuk et al., 1998). The pathways by which educational attainment and health out- comes affect each other have yet to be established (Grossman and Kaestner, 1997). The component parts of educational attainment, such as literacy skills, also have not yet been examined in full.

Reliable and valid measures of health literacy will enable researchers to establish and monitor the magnitude of the issue, changes over time, the links between health literacy and health outcomes, factors that lead to health literacy, and the effectiveness of health literacy interventions. Ro- bust health literacy indicators are needed to move this field of inquiry forward. Although the committee is not in a position to develop such measures, it has identified some potentially worthwhile directions to move towards.

The first is conceptual. As noted above, several definitions of health literacy are in current use. Consensus is needed to develop an operationally defined construct of health literacy. This can be accomplished through a national consensus conference, bringing together stakeholders from a wide array of health contexts and researchers in health, education, and psycho- metrics to address the issue of developing operational measures of health literacy at population levels. Such a conference could build on the work of this committee by adopting the definition recommended here and concen- trating on the measurement issues identified by the committee.

Conference participants might consider a process similar to that under- taken for the development of the national and international assessments of functional literacy, but with a unique focus on health contexts. Such a focus would build on this report to develop a detailed and consistent theoretical model delineating health contexts and articulating the inherent demands and assumptions within each context. Researchers could be charged with rigorously collecting health-related texts and tasks used in and outside of health-care settings. These researchers then could conduct a purposive sam- pling to adequately represent the broad array of health activities in appro- priate contexts. Numerous text types would have to be represented for each context area. Both the materials and the tasks associated with them would have to be carefully calibrated for levels of complexity and difficulty.

Furthermore, such materials and tasks must consider the role of oral language skills in health literacy. As noted above, oral language skills, including both speaking and listening comprehension, were not assessed by national literacy assessments such as the NALS or IALS. Further explora- tions are needed, in partnership with scholars in health communication, education, and linguistics, to develop meaningful measures of oral exchange skills that are so vital to health contexts.

Causal relationships are another area for future exploration. The Na- tional Institutes of Health (NIH), foundations, and for-profit organizations

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WHAT IS HEALTH LITERACY? 53

that support health research, particularly on health disparities and inequali- ties, could address the interrelationships between limited health literacy and cultural and socioeconomic factors by encouraging research to develop and test causal models. Establishing causality could help identify intervention points. Factors to be considered in the exploration of causality include the relationships between and among health literacy, socioeconomic status, health status, educational achievement, geographic location, and culture. These relationships should be considered in the design of large population surveys.

Links between health literacy and health outcomes initially could be made through data collection of a number of illustrative public health, medical, and dental indicators. These might include data relevant to immu- nization, cancer screening, cardiovascular disease prevention, and on-going measures of physical activity and nutritional practices. Other opportunities might include measures of tobacco use, substance use, or injury. Of critical concern would be access to care and insurance status. In addition, moni- toring mechanisms for literacy-related access barriers and supportive fac- tors in hospitals, physician practices, pharmacies, and workplaces are sorely needed.

National government and statistical agencies could incorporate mea- sures of health literacy into their work on an ongoing basis. This would include on-going national surveys of adult literacy such as the NAAL, designed to follow the 1992 NALS. NAAL has broadened the representa- tion of health tasks and items in the current survey and the results will include a separate “health literacy score” derived from questions which assess how well adults apply literacy skills to understand health-related materials (National Center for Education Statistics, 2003). Health literacy measures could be incorporated into other ongoing national surveys such as the Health Interview Survey (HIS), the Medical Expenditure Panel Survey (MEPS), Medicare Beneficiary Survey (MBS), and the Behavioral Health Risk Factor Surveillance System (BHRFSS). The status of health literacy can be gauged, quantified, and monitored at timely intervals with such indica- tors if they are developed through partnerships with national institutions charged with ongoing data collection for health, education, and labor.

Simple measures of health literacy that better reflect the entire literacy skill set in the context of health are needed for use in intervention research studies. Researchers in a variety of settings would benefit from simple and unobtrusive measures to explore the links between individuals’ literacy- related skills and a variety of outcome measures. Further development of assessments that differentiate between and among measures of basic lit- eracy, print literacy for health-related texts and purposes, and health lit- eracy as a whole would provide greater insight into the factors underlying

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54 HEALTH LITERACY

limited health literacy. More rigorous work is needed to develop appropri- ate, reliable, and valid measures.

For current practice in health-care settings, practitioners could consider the use of informal assessment measures to gauge health literacy. For ex- ample, this may involve asking such questions as “How do you learn best?” or “What would help you most as you learn about your illness and how to take care of yourself? or “What help do you need for taking this medicine properly?” Health educators could explore where and how people access health information and the kinds of visual, oral, or printed materials people are most comfortable and familiar with. Such informal assessment tech- niques can be coupled with more formal but easy-to-administer literacy assessment methods to create a health literacy profile and promote more meaningful exchanges of information (Doak CC et al., 1998; Doak LG et al., 1996; Meade, 2001).

A variety of evaluation measures can be infused into the dialogue be- tween patients and care providers. Doak CC et al. (1996) provide a series of helpful questions that verify understanding of information. For example, the care provider might ask “Can you tell me in your own words what the purpose of this medical test is and how you will prepare for it?” to quickly identify any communication mismatches or misunderstandings and allow for clarifications. Approaches to limited health literacy that focus on changes in clinical practices are discussed in detail in Chapter 5. Research directions would benefit from considering the strengths and weaknesses of current practice, so that the most reliable and effective approaches can be identified.

Finding 2-1 Literature from a variety of disciplines is consistent in finding that there is strong support for the committee’s conclusion that health literacy, as de- fined in this report, is based on the interaction of individuals’ skills with health contexts, the health-care system, the education system, and broad social and cul- tural factors at home, at work, and in the community. The committee concurs that responsibility for health literacy improvement must be shared by various sectors. The committee notes that the health system does carry significant but not sole opportunity and responsibility to improve health literacy.

Finding 2-2 The links between education and health outcomes are strongly es- tablished. The committee concludes that health literacy may be one pathway ex- plaining the well-established link between education and health, and warrants fur- ther exploration.

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REFERENCES

Adler NE, Ostrove JM. 1999. Socioeconomic status and health: What we know and what we don’t. Annals of the New York Academy of Sciences. 896: 3–15.

Alexander M. 1990. Informed consent, psychological stress and noncompliance. Humane Medicine. 6(2): 113–119.

American Medical Association. 1999. Health literacy: Report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Journal of the American Medical Association. 281(6): 552–557.

Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. 1999. Development of a brief test to measure functional health literacy. Patient Education and Counseling. 38: 33–42.

Finding 2-3 Health literacy, as defined in this report, includes a variety of compo- nents beyond reading and writing, including numeracy, listening, speaking, and relies on cultural and conceptual knowledge.

Finding 2-4 While health literacy measures in current use have spurred research initiatives and yield valuable insights, they are indicators of reading skills (word recognition or reading comprehension and numeracy), rather than measures of the full range of skills needed for health literacy (cultural and conceptual knowl- edge, listening, speaking, numeracy, writing and reading). Current assessment tools and research findings cannot differentiate among (1) reading ability, (2) lack of background knowledge in health-related domains, such as biology, (3) lack of familiarity with language and types of materials, and (4) cultural differences in approaches to health and health care. In addition, no current measures of health literacy include oral communication skills or writing skills and none measure the health-literacy demands on individuals within different health contexts.

Recommendation 2-1 The Department of Health and Human Services and oth- er government and private funders should support research leading to the devel- opment of causal models explaining the relationships among health literacy, the education system, the health system, and relevant social and cultural systems.

Recommendation 2-2 The Department of Health and Human Services and pub- lic and private funders should support the development, testing, and use of cultur- ally appropriate new measures of health literacy. Such measures should be devel- oped for large ongoing population surveys, such as the NAAL Survey, the MEPS, the BHRFSS, and the MBS, as well as for institutional accreditation and quality assessment activities such as those carried out by the Joint Commission on Ac- creditation of Healthcare Organizations and the National Committee for Quality Assurance. Initially, NIH should convene a national consensus conference to ini- tiate the development of operational measures of health literacy that would include contextual measures.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

56 HEALTH LITERACY

Berkman LF, Kawachi IO. 2000. Social Epidemiology. Oxford: Oxford University Press. Blanchard JS, Garcia HS, Carter RM. 1989. Instrumento Para Diagnosticar Lecturas

(Español-English): Instrument for the Diagnosis of Reading. Dubuque, IA: Kendall- Hunt.

Campbell A, Kirsch IS, Kolstad A. 1992. Assessing Literacy: The Framework for the National Adult Literacy Survey. Washington, DC: National Center for Education Statistics, U.S. Department of Education.

Chew LD, Bradley KA. 2003. Brief questions to detect inadequate health literacy among VA patients. Abstract. Journal of General Internal Medicine. 18(Supplement 1): 170.

Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, Crouch MA. 1993. Rapid estimate of adult literacy in medicine: A shortened screening instrument. Family Medicine. 25(6): 391–395.

Davis TC, Michielutte R, Askov EN, Williams MV, Weiss BD. 1998. Practical assessment of adult literacy in health care. Health Education and Behavior. 25(5): 613–624.

Doak CC, Doak LG, Root J. 1996. Teaching Patients with Low Literacy Skills. 2nd edition. New York: Lippincott.

Doak CC, Doak LG, Friedell GH, Meade CD. 1998. Improving comprehension for cancer patients with low literacy skills: Strategies for clinicians. Ca: A Cancer Journal for Clini- cians. 48(3): 151–162.

Doak LG, Doak CC, Meade CD. 1996. Strategies to improve cancer education materials. Oncology Nursing Forum. 23(8): 1305–1312.

Dumas RG. 1966. Utilization of stress as a therapeutic nursing measure. Utilization of a concept of stress as a basis for nursing practice. ANA Clinical Sessions. 193–212.

Edelberg HK, Shallenberger E, Hausdorff JM, Wei JY. 1998. Application of the DRUGS tool to assess function in ambulatory elderly. Abstract. Journal of the American Geriatrics Society. 46(9): S103.

Edelberg HK, Shallenberger E, Wei JY. 1999. Medication management capacity in highly functioning community-living older adults: Detection of early deficits. Journal of the American Geriatrics Society. 47(5): 592–596.

Edelberg HK, Rubin RN, Palmieri JJ, Leipzig RM. 2001. Preliminary validation of the Drug Regimen Unassisted Grading Scale (DRUGS) in community dwelling older adults. Jour- nal of the American Geriatrics Society. 49(4): S65–S66.

Flesch R. 1974. The Art of Readable Writing. New York: Harper and Row. Fry EB. 1977. Elementary Reading Instruction. New York: McGraw-Hill. Grossman M, Kaestner R. 1997. The effects of education on health. In: The Social Benefits of

Education. Behermean R, Stacey N, Editors. Ann Arbor, MI: University of Michigan Press. Pp. 69–123.

HHS (U.S. Department of Health and Human Services). 2000. Healthy People 2010: Under- standing and Improving Health. Washington, DC: U.S. Department of Health and Hu- man Services.

Jastak S, Wilkinson GS. 1984. Wide Range Achievement Test–Revised (WRAT-R). Jastak Assessment Systems.

Joint Committee on National Health Education Standards. 1995. National Health Education Standards: Achieving Health Literacy. Atlanta, GA: American Cancer Society.

Joint Task Force on Assessment, International Reading Association and National Council of Teachers of English. 1994. Standards for the Assessment of Reading and Writing. New- ark, DE: International Reading Association.

Kaufman M. 2003, September. FDA Offers Guidance on Hormone Therapy. The Washington Post.

Kerka S. 2000. Health and Adult Literacy. Practice Application Brief No. 7. Columbus, OH: ERIC Clearinghouse on Adult, Career, and Vocational Education.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

WHAT IS HEALTH LITERACY? 57

Kickbusch I. 1997. Think health: What makes the difference? Health Promotion Interna- tional. 12: 265–272.

Kirsch IS. 2001a. The framework used in developing and interpreting the International Adult Literacy Survey (IALS). European Journal of Psychology of Education. 16(3): 335–361.

Kirsch IS. 2001b. The International Adult Literacy Survey (IALS): Understanding What Was Measured. Princeton, NJ: Educational Testing Service.

Kirsch IS, Jungeblut A. 1986. Literacy: Profiles of America’s Young Adults. Princeton, NJ: Educational Testing Service.

Kirsch IS, Jungeblut A. 1992. Profiling the Literacy Proficiencies of JTPA and ES/UI Popula- tions: Final Report to the Department of Labor. Washington, DC: Employment and Training Administration.

Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. 1993. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey (NALS). Washington, DC: National Center for Education Statistics, U.S. Department of Education.

Markwardt FS. 1989. Peabody Individual Achievement Test–Revised. Circle Pines, MN: American Guidance Service.

McLaughlin GH. 1969. SMOG grading: A new readability formula. Journal of Reading. 12(8): 639–646.

Meade CD. 2001. Community health education. In: Community Health Nursing: Promoting the Health of Aggregates. 3rd edition. Nies M, McEwen M, Editors. Philadelphia: W.B. Saunders Co.

Mosenthal PB, Kirsch IS. 1998. A new measure for assessing document complexity: The PMOSE/IKIRSCH document readability formula. Journal of Adolescent and Adult Lit- eracy. 41(8): 638–657.

Nath CR, Sylvester ST, Yasek V, Gunel E. 2001. Development and validation of a literacy assessment tool for persons with diabetes. Diabetes Educator. 27(6): 857–864.

National Center for Education Statistics. 2003. NAAL 2003: Overview. [Online]. Available: http://nces.ed.gov/naal/design/about02.asp [accessed: December, 2003].

Nurss JR, Baker D, Davis T, Parker R, Williams M. 1995. Difficulty in functional health literacy screening in Spanish-speaking adults. Journal of Reading. 38: 632–637.

Pamuk E, Makuc D, Heck K, Rueben C, Lochner K. 1998. Socioeconomic Status and Health Chartbook. Health, United States, 1998. Hyattsville, MD: National Center for Health Statistics.

Parker RM, Baker DW, Williams MV, Nurss JR. 1995. The Test of Functional Health Lit- eracy in Adults: A new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine. 10(10): 537–541.

Ratzan SC, Parker RM. 2000. Introduction. In: National Library of Medicine Current Bibli- ographies in Medicine: Health Literacy. Selden CR, Zorn M, Ratzan SC, Parker RM, Editors. NLM Pub. No. CBM 2000-1. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.

Roter DL, Stashefsky-Margalit R, Rudd R. 2001. Current perspectives on patient education in the U.S. Patient Education and Counseling. 44(1): 79–86.

Rudd R. 2003. Objective 11-2: Improvement of health literacy. In: Communicating Health: Priorities and Strategies for Progress. Washington, DC: Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services.

Rudd RE, Colton T, Schacht R. 2000. An Overview of Medical and Public Health Literature Addressing Literacy Issues: An Annotated Bibliography. Report #14. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.

Rudd RE, Comings JP, Hyde J. 2003. Leave no one behind: Improving health and risk communication through attention to literacy. Journal of Health Communication, Special Supplement on Bioterrorism. 8(Supplement 1): 104–115.

Copyright © National Academy of Sciences. All rights reserved.

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Slosson RJL. 1990. Slosson Oral Reading Tests—Revised. East Aurora, NY: Slosson Educa- tional Publishers.

Taylor WL. 1953. “Cloze procedure”: A new tool for measuring readability. Journalism Quarterly. 30: 415–433.

Williams DR. 1990. Socioeconomic differentials in health: A review and redirection. Social Psychology Quarterly. 53: 81–99.

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59

3

The Extent and Associations of Limited Health Literacy

This report has already noted that an individuals’ health literacy level is the product of a complex set of skills and interactions on the part of the individual, the health-care system, the education system, and

the cultural and societal context. It has also been noted that most individu- als will encounter health literacy barriers at some point. High educational attainment may not be sufficient to negotiate medical and technical lan- guage and meanings. The following chapters discuss in more detail some of the barriers and potential approaches to health literacy in the various con- texts. Here, the focus is on the individual, and particularly, on the indi- vidual who has limited literacy skills. This chapter provides an overview of how limited health literacy may restrict an individual’s participation in health contexts and activities. Look at Figure 3-1 on the following page and put yourself in the shoes of a patient with limited literacy skills. How would you feel, what would you do, where would you go, to whom would you turn if this medication is prescribed for you by your doctor? How compli- ant could you be about taking your medications correctly?

Navigating modern life in America with very limited literacy can be like trying to find a hotel in another land, armed with a map of the city but unable to decipher the letters on the street signs. Everyone—not just those with limited literacy skills—is increasingly faced with difficult and confus- ing text at work, at home, in institutional settings such as schools, banks, social service organizations, and within health-care settings. People of all literacy levels might be able to manage texts that they frequently encounter

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60 HEALTH LITERACY

and use for everyday activities, but will often face problems with unfamiliar types of text. For example, a woman who has never lived near a public transportation system may find herself unable to interpret a bus schedule. Directions for operating a particle accelerator, filing income tax returns, or choosing between health insurance plans may be similarly indecipherable for most adults, regardless of literacy skills in other contexts.

As discussed in detail in Chapter 2, current measures of health literacy rely primarily on print in the health context and not on the broad array of skills needed for true health literacy. However, since skills with the written word are linked to skills with the spoken word, we can use information from these measures as a starting point to make reasonable assumptions about the average health literacy skill level of adults in the United States. The following section examines the extent of the problem of health literacy, estimated from existing measures of literacy based on the National Adult Literacy Survey (NALS) and from assessments of health literacy.

LITERACY IN AMERICA

About 90 million (47 percent) U.S. adults cannot accurately and consis- tently locate, match, and integrate information from newspapers, advertise- ments, or forms (Kirsch et al., 1993). These adults can perform a variety of

FIGURE 3-1 Mock-up prescription medication instructions in Bahasa Malaysia, the written language of Malaysia. SOURCE: Shinagawa and Foong (2003). Reprinted with permission.

Kedai Ubat Sunshine 123 Jalan Main, Los Angeles, CA 90015

Nama Paskit: John Lin

Nama Ubat: Crixivan (empat ratus mg)

Arahan: Telan dua biji, tiga kali sehari. Jangan makan dua jam sebelum dan satu jam selepas anda makan ubat ini.

Mustahak! Sila baca: Ubat ini mungkin menyebabkan cirit birit, loya kagatalan kulit, kekeringan kulit, sakit kepala, atau sakit perut. Pesakit dinasihatkan supaya minum banyak air untuk mengelakkan pembentukan batu karang.

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EXTENT AND ASSOCIATIONS 61

straightforward tasks using printed materials; however, they are unlikely to perform, with accuracy and consistency, more challenging tasks using long or dense texts. These findings have been compared to those in 22 industri- alized nations that participated in the International Adult Literacy Surveys. The U.S. scores are very similar to those in Canada, higher than those in England or Ireland, but lower than those in the Scandinavian countries (Organization for Economic Co-operation and Development and Statistics Canada, 2000). U.S. and international education and workforce research- ers note that the average skill levels are barely sufficient for full participa- tion in the civic and economic sectors of current industrialized societies (Sum et al., 2002). About 90 million adults have skills that are inadequate for many needed tasks.

Of the 90 million adults with limited literacy skills, about 42 million demonstrated skills in NALS Level 1. Of these, a small percentage had such limited English literacy skills that they were unable to respond to much of the survey. Most people performing at Level 1 can perform simple and routine tasks using uncomplicated materials. They can, for example, locate a single piece of information in a short and simple piece of text. However, they have trouble with tasks requiring them to locate or match several pieces of information in moderately complicated texts. Adults performing at NALS Level 1 can solve simple math problems when the numbers and the operations are provided but find it difficult to solve the same problems when they must locate the numbers and the operations in a piece of text (Kirsch, 2001; Kirsch et al., 1993). A package of over-the-counter pediatric cold medicine can be used as an example. An adult performing at NALS Level 1 would likely be able to locate the words child, children, pediatric on a package of cold medicine for children. However, one would not expect an adult with NALS Level 1 skills to be able to read a chart in order to identify “how much . . . syrup is recommended for a child who is 10 years old and weighs 50 pounds?” What makes this task so much more complex and difficult is the fact that the structure of the chart is in columns starting with age, then typical weights associated with age, then dosage by type including drops, syrup, chewable 80 mg, and chewable 160 mg. The typical reader would look down the column to find the age of the child and then over the row to the column for syrup. In very small print outside the chart itself there is a conditional statement that tells the reader “if child is significantly under- or overweight, dosage may need to be adjusted accordingly . . . .” This level task would fall at NALS level 4 or 5 (Rudd et al., 2003).

Of the 90 million adults with limited literacy skills, 50 million adults nationwide demonstrated skills at NALS Level 2. Those adults who scored at NALS Level 2 can locate information in moderately complicated text, make low-level inferences using print materials, and integrate easily identi- fiable pieces of information. They can solve simple math problems when

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62 HEALTH LITERACY

the numbers and operations are found in familiar and uncomplicated mate- rials. However, adults at Level 2 find it difficult to perform these operations in difficult text and to perform operations that are complicated by distract- ing information and complex texts (Morse, 2002). In addition, they will find the demands of the chart to determine dosage for children’s cold medicine difficult and, according to studies assessing informed consent documents, will find the process of informed consent arduous and most likely not possible.

Most of the adults in NALS Levels 1 and 2 are “literate”; however, adults in Level 1 are at a severe disadvantage and adults in Level 2 are disadvantaged, in relation to the demands of twenty-first century life. These findings have serious implications for the health sectors. Rudd, Kirsch, and Yamamoto, in a reanalysis of the NALS with a focus on health-related tasks only, report similar findings (Rudd et al., 2003). The 1992 NALS survey provides the most recent nationally representative population survey data on literacy skills of adults in the United States. The committee believes that levels of American literacy have not improved over the past decade and that health systems have become more complex. The committee looks forward to the publication of the National Assessment of Adult Literacy1 (NAAL), conducted in 2003, which contains health-related literacy tasks. The com- mittee believes that the NAAL will significantly expand our understanding of literacy and health literacy in America, and regrets that the data are not yet available. In addition, a representative sample of American adults is included in the new international Adult Literacy & Lifeskills Survey (ALL).2

Linked to the NAAL framework, the ALL also contains health-related lit- eracy tasks. These two surveys have the potential to provide detailed infor- mation on the extent of limited health literacy in America.

Demographic Associations with Limited Literacy

The largest proportion of American adults with limited literacy are native-born Caucasian speakers of English. Over half of the people with NALS Level 1 skills are Caucasians, and about 57 million Caucasian Ameri- cans have limited literacy skills (NALS Levels 1 and 2) (Kirsch et al., 1993). However, many groups with higher rates of limited literacy than would be predicted from population estimates alone were identified by the NALS. Groups with lower average proficiency scores include those who are poor, members of ethnic and cultural minorities, those who live in the southern

1For more information, see the NAAL on the National Center for Education Statistics web site: http://nces.ed.gov/naal/.

2For more information, see ALL on the Educational Testing Service web site: http://www. ets.org/all.

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EXTENT AND ASSOCIATIONS 63

and western regions of the United States, those with less than a high school degree or GED, and those who are above the age of 65. It is important to keep in mind that the NALS was performed only in English, and that clear differentials for literacy proficiencies can be seen within each population group on the basis of nativity, education, and access to economic resources (Kirsch et al., 1993). Table 3-1 displays the percentage of persons overall and various demographic groups that have NALS Level 1 or 2 literacy skills, the lowest of five skill levels. Each of these groups is discussed briefly below in order to highlight those that could potentially benefit from inter- ventions aimed at improving health literacy.3

Adults over the age of 65 have more limited literacy proficiency than younger, working adults, according to the NALS data. However, cross- tabulations indicate that scores for elders vary by education level and access to financial resources (Kirsch et al., 1993). Hispanics, African Americans, Pacific Islanders, and Native Americans are also (including Alaska Natives) over-represented in the numbers of adults with lower literacy proficiency scores, as indicated by the NALS data (Kirsch et al., 1993). These popula- tions have increased in number since 1992, when the NALS was performed, and as a group represent a larger proportion of the U.S. population (U.S. Census Bureau, 2002). Hispanic and Asian populations in particular have increased at a greater rate than other U.S. populations. While more recent literacy data is not yet available, these population increases may represent an increase in the number of individuals, and the percentage of American adults, affected by limited health literacy.

Individuals without a high school diploma or GED have lower levels of literacy proficiency than do those with a high school diploma or education beyond high school. Nearly all adults who did not finish eighth grade scored at Level 1 or 2 on the NALS, and 77 percent of these individuals scored at Level 1. Similarly, among individuals who entered high school but did not graduate, 81 percent scored at NALS Levels 1 or 2, while only 55 percent of high school graduates scored at those levels (Kirsch et al., 1993). Since between 400,000 and 500,000 students drop out of high school each year in the United States (Young, 2002), high school dropouts constitute a large population likely living without adequate literacy skills.

Overall, more than 70 percent of immigrants tested on the NALS scored at Levels 1 or 2. The NALS was conducted in English only. Thus the finding that 25 percent of those scoring in the lowest levels of literacy proficiency were immigrants to the United States might be expected, since many of

3The information in this section is drawn in part from the background paper “Outside the Clinician-Patient Relationship: A Call to Action For Health Literacy,” commissioned by the committee from Barry D. Weiss, M.D. The committee appreciates his contributions. The full text of the paper can be found in Appendix B.

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64 HEALTH LITERACY

TABLE 3-1 Percentage of Adult Population Groups with Literacy Skills at NALS Levels 1, 2, or 3–4

Percent Respondents at Skill Level

Group Level 1 Level 2 Levels 3–4

All NALS Respondents 22 28 50

Age 16–54 years 15 28 57 55–64 years 28 33 39 65 years and older 49 32 19

Highest Education Level Completed 0–8 years 77 19 4 9–12 years (no high school graduation) 44 37 19 High school diploma/GED (no college study) 18 37 45

Racial/Ethnic Group White 15 26 59 American Indian/Alaska Native 26 38 36 Asian/Pacific Islander 35 25 40 Black 41 36 23 Hispanic (all groups) 52 26 22

Immigrants to US (various countries of origin) 0–8 years of education prior to arrival in US 60 31 9 9+ years of education prior to arrival in US 44 27 29

Disability Any mental or emotional condition 48 26 27 Learning disability 59 22 19 Hearing difficulty 35 34 32 Speech disability 54 27 19 Visual difficulty 55 26 19

SOURCE: Unadjusted averages of prose and document literacy scores on the NALS as re- ported on Tables 1.1A, 1.1B, 1.2A, 1.2B, 1.8, and Figure 1.10 in Kirsch et al. (1993) and on Table B3.13 in the U.S. Department of Education’s report English Literacy and Language Minorities in the United States (2001).

those immigrants might have just begun to learn English. In addition, 91 percent of those who did not complete a high school education in their country of origin scored at the lowest levels of proficiency (see Table 3-1). A high proportion of people entering the United States from non-English- speaking nations come from non-industrialized areas of the world in which there are limited educational opportunities. For example, more than half of adults who emigrate to the United States from Spanish-speaking countries

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EXTENT AND ASSOCIATIONS 65

had not finished high school in their country of origin (Greenberg et al., 2001).

Individuals who described themselves as having a physical or mental condition which prevented them from participating fully in normal activi- ties tended to score at the lowest levels of proficiency. More than half the individuals with vision, speech, or learning disabilities performed at NALS Level 1, as did 48 percent of individuals reporting a mental or emotional condition. In contrast, 35 percent of individuals reporting a hearing diffi- culty performed at NALS Level 1.

Approximately 7 of 10 prisoners surveyed by the NALS demonstrated limited literacy proficiency. Individuals who did not finish school are over- represented among prison inmates, so in many cases, prisoners represent the same individuals as those with limited education. NALS investigators studied nearly 1,150 inmates in 80 federal and state prisons that had been randomly selected to represent penal institutions across the country (Haig- ler, 1994).

Several other groups, not specifically studied in the NALS, are also known to have limited literacy skills. These groups include the persons who are poor and/or homeless, and military recruits. As discussed in Chapter 2, social factors affect literacy. Poverty is intertwined with many sociodemo- graphic variables (Balsa and McGuire, 2001), which, in turn, are associated with limited literacy. Although the causal relationships are not known, individuals with limited incomes/access to resources are also more likely than those with higher incomes/access to resources to have lower literacy proficiency (Kirsch et al., 1993). Homeless individuals, who may also be affected by limited literacy and poverty, are the audience recipients of a variety of state programs developed to enhance literacy skills (Profiles of State Programs, 1990). Weiss and colleagues used Medicaid enrollment as a proxy for low income and administered the Instrument for the Diagnosis of Reading/Instrumento Para Diagnosticar Lectura (IDL) as a measure of lit- eracy. They found that the majority of low-income individuals involved in their study had limited reading skills, with the average score at the fifth- grade level (Weiss et al., 1994). In addition, reading and mathematics skills of potential military recruits are assessed, and enlistment in the military requires passing these tests. As many recruits cannot adequately perform the high school level reading tasks they face in the military, all branches of the military operate educational programs to increase the literacy skills of their members (Hegerfeld, 1999).

THE EPIDEMIOLOGY OF LIMITED HEALTH LITERACY

Ninety million people—approximately one-half of our adult popula- tion—lack the basic literacy skills required for full participation in Ameri-

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66 HEALTH LITERACY

can society (Comings et al., 2001; Sum et al., 2002). Basic literacy skills that can be applied in the context of health are required for health literacy. As discussed in Chapter 2, there are no assessment tools that fully measure health literacy, and consequently, no population-based study to date has directly examined the relationship of literacy to health literacy or of health literacy, as fully defined, to health. However, correlations between mea- sures of literacy and measures of reading in the health context such as the Rapid Estimate of Adult Literacy in Medicine (REALM) and the Short Test of Functional Health Literacy in Adults (S-TOFHLA) suggest a strong asso- ciation (Davis et al., 1993; Parker et al., 1995).

Routine health and health-care tasks are often complicated and may require more literacy skills than those needed to meet the demands of everyday life. To date, no researcher has fully delineated tasks needed for the full range of health-related activities nor has anyone fully calibrated the levels of complexity of the various types of materials used in health con- texts. However, a review of health literature indicates that research findings over three decades place a wide variety of assessed materials (based prima- rily on reading level analyses) at levels that exceed the reading skills of most high school graduates (Rudd et al., 2000a). The substantial volume of literature focused on assessments of health-related materials.

Health literacy may also be more reliant on domains of literacy such as oral (speaking) ability and aural (listening) comprehension that are not measured by NALS, or the tools currently used to measure health literacy (discussed in Chapter 2 of this report). Recognizing that basic literacy skills are required for health literacy, it is reasonable to conclude that individuals with limited literacy—the 90 million individuals that scored in Levels 1 and 2 of NALS—probably also have limited health literacy. These individuals likely lack the necessary literacy skills in English needed to effectively ob- tain and understand much of the health-related information they will inter- act with at home, at work, or in their communities. Furthermore, limited health literacy probably affects more than just those with limited literacy. Individuals with adequate literacy may be affected by the complex literacy demands of the health-care context, and some individuals may continue to be affected despite attempts to reduce these demands. These findings, com- bined with the average NALS scores of U.S. adults, offer a strong argument that 90 million U.S. adults are severely disadvantaged as they attempt to function in health-care contexts. The committee considers health literacy to be a reciprocal function of the health context and the individual. Therefore, any person, no matter what literacy skills he or she possesses, may well have limited health literacy once he or she enters complex health-care con- texts.

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EXTENT AND ASSOCIATIONS 67

I am a nurse with advanced degrees. I read on a college level. Yet, I am a total health illiterate. How can this be? Well, I’ve been diagnosed with an unusual type of autoimmune disease that has extended into several other diseases, one of which—lymphoma—might be fatal. Yet despite my healthcare background, my ability to understand the written word at a high grade level, and the many resources at my immediate disposal, I still don’t understand everything I need to know about my condition. I am writing this to share with you that it is difficult to piece together all the various compo- nents of the healthcare system even when you have a knowledgeable support system and excellent reading ability. I am sharing my personal health situa- tion with you because even with all the supposed advantages I have as mentioned above, I still don’t understand my condition and prognosis (Mayer, 2003).

Finding 3-1 About 90 million adults, an estimate based on the 1992 NALS, have literacy skills that test below high school level (NALS Levels 1 and 2). Of these, about 40–44 million (NALS Level 1) have difficulty finding information in unfamiliar or complex texts such as newspaper ar- ticles, editorials, medicine labels, forms, or charts. Because the medical and public health literature indicates that health materials are complex and often far above high school level, the committee notes that approximately 90 million adults may lack the needed literacy skills to effectively use the U.S. health system. The majority of these adults are native-born English speakers. Literacy levels are lower among the elderly, those who have lower educational levels, those who are poor, minority populations, and groups with limited English proficiency such as recent immigrants.

Studies of Limited Health Literacy

In this section, we examine the extent of limited health literacy by examining peer-reviewed studies that provide evidence about the epidemi- ology, or relative rates, of health literacy skills using currently available measures in different demographic groups. The conclusions that can be drawn about health literacy from this research are limited because in most cases, the studies below identify individuals and groups in which only the print component of health literacy skills is measured (see Chapter 2).

Studies described in this and the following section represent a sample of the English-language peer-reviewed studies that measure literacy or use the REALM or TOFHLA among patients or consumers in a health context. We note that these measures are, for the most part, assessments of print literacy in the health context. While these measures all tap into some aspect of health literacy, the studies do not necessarily use the same standard for

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68 HEALTH LITERACY

identifying people with limited skills. It is even the case that any two tests both claiming to use grade-level scores would not identify the same students as being below a selected standard because their norming samples most likely were not the same. Thus the percentages falling below a particular standard are not directly comparable, but do clearly point to where prob- lems exist.

Studies were identified by searching the Medline (1966–2003), PsycInfo (1974–2003), ERIC4 (1963–2003), Sociological Abstracts (1963–2003), and CINAHL5 (1982–2003) databases through the OVID web gateway for the indicated years with the following terms as keyword searches: “health literacy,” “literacy and health,” and “reading and health.” To be included, the study had to define the health or health-care population cohort, the literacy measurement tool, and the result of the literacy screening assess- ment. Additional studies for inclusion were identified through testimony to the committee by experts in the field (see Appendix A), and the available bibliographies (Greenberg, 2001; Rudd et al., 2000b; Zobel et al., 2003).

Table 3-2 summarizes identified studies containing information on the rates of health literacy skills as currently measured among various study populations. Results are given as percentages of the study participants with (1) marginal and inadequate health literacy as measured by the TOFHLA (Parker et al., 1995) or its shorter version (S-TOFHLA; Baker et al., 1999); or (2) inadequate health literacy as indicated by a score below grade 9 on the REALM (Davis et al., 1993); or (3) what the authors reported if a standard measure was not used or if a standard measure was modified. Table 3-2 also identifies the reported demographic characteristics of the study participants that were reported to be associated with limited health literacy.

Studies noted in Table 3-2 document the prevalence of limited health- literacy skills as measured by the REALM or TOFHLA among patients in general medical and pediatric clinics; specialty care clinics including those for asthma, HIV, family planning, obstetrics, and oncology; and commu- nity-based sites including retirement homes and social service agencies. The studies show that limited health literacy skills, as measured by current assessment tools, are common, with significant variations in prevalence depending on the population sampled (Williams et al., 1998b). In many cases, however, education was not controlled for, and in some cases differ- ences based on health literacy assessments were no longer significant when education was controlled for.

Two large multisite studies of convenience samples that provide esti-

4Educational Resources Information Center. 5Cumulative Index to Nursing and Allied Health Literature.

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EXTENT AND ASSOCIATIONS 69

mates of the prevalence of limited health literacy among users of urban public hospitals showed variation in prevalence in different geographic locations. In one study, Williams and colleagues (1995) administered the TOFHLA in either English or Spanish to patients presenting for acute care at public hospitals in Atlanta and Los Angeles. The study participants included 1,892 English speakers from Atlanta or Los Angeles, and 767 Spanish-speaking individuals from Los Angeles only. Almost half (47.4 percent) of the participants in Atlanta had inadequate (34.7 percent) or marginal (12.7 percent) health literacy scores on the TOFHLA, while in Los Angeles the rates of limited and marginal health literacy scores were 12.5 percent and 9.5 percent for English speakers and 41.9 percent and 19.8 percent for Spanish speakers. Spanish-speaking participants (tested in Span- ish) had higher rates of limited health literacy scores than did English- speaking participants, but these differences were not significant after con- trolling for years of education.

A more recent multisite study used the S-TOFHLA to assess new enroll- ees in a Medicare managed care organization in four different geographic areas: Cleveland, Houston, Tampa, and an area of southern Florida includ- ing Fort Lauderdale and Miami (Gazmararian et al., 1999b). Participants were 304 Spanish-speaking and 2,956 English-speaking enrollees. The prevalence of inadequate and marginal health literacy scores on the S- TOFHLA among English speakers was 23.5 percent and 10.4 percent, respectively, while among Spanish speakers prevalence rates were 34.2 per- cent and 19.7 percent. Results varied by city, with the participants in Cleve- land showing the highest rate of inadequate health literacy scores among English speakers at 34.1 percent, and those in Tampa showing the lowest rate at 16.6 percent. The geographic variation between Spanish-speaking populations was even more striking; 60 percent of those in Tampa had inadequate health literacy scores compared with 21.2 percent of those in Houston. The authors of this study indicated that the geographic variation between study sites might reflect differences in the interrelated characteris- tics of race, language, and socioeconomic status. However, when these variables were controlled for, participants in Cleveland continued to show the highest rates of limited health literacy scores among English speakers. Factors mediating geographic differences in skills remain unknown and warrant further investigation. Increased awareness of these variations could lead to regionally tailored health literacy interventions.

Studies shown in Table 3-2 suggest that the segments of the U.S. popu- lation that could be considered at greatest risk for limited health literacy are those that were reported to have higher rates of limited literacy in the NALS study and other sources. As with limited literacy reported in the NALS (Kirsch et al., 1993), limited health literacy as currently measured is more prevalent among the elderly (Beers et al., 2003; Benson and Forman, 2002;

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70 HEALTH LITERACY

TABLE 3-2 The Epidemiology of Health Literacy Skills Among Various Populations

Participation Citation Population Rate Study Design Setting

Arnold N = 600 96% Convenience Obstetric clinics, et al., 2001 Pregnant women sample Louisiana

296 African American

303 Caucasian Mean age:

23 years

Beers et al., N = 1805 — — Primary care 2003. 58% African clinics, VA Published American medical center Abstract 66% male and university

(Health Literacy hospital and Patient Satisfaction Study)

Bennett N = 212 96% Convenience Prostate clinics et al., 1998 African sample in Shreveport,

American, 103 LA, and Mean age: Chicago, IL

70.8 years

Benson and N = 93 52% Convenience Affluent Forman, 2002 71 women sample retirement

Mean age: community in 83 years Albuquerque,

NM

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EXTENT AND ASSOCIATIONS 71

Reported Demographic Associations with

Measure Low Health Literacy Prevalence of Literacy Levels

REALM African American race African American women 3rd and below: 9% 4th–6th: 19% 7th–8th: 41% 9th and above: 31%

Caucasian women 3rd and below: 4% 4th–6th: 5% 7th–8th: 26% 9th and above: 66%

REALM African American race REALM Older age 3rd and below: 2% Lower education level 4th–6th: 8% Association with age 7th–8th: 31%

was no longer 9th and above: 59% significant when stratified by education level

Association with race remained significant when stratified by education level

REALM African American race African American men Geographic location 6th and below: 52.3%

(Louisiana site) Caucasian men: 6th and below: 8.7%

Chicago, IL: 6th and below: 12.3%

Shreveport, LA: 6th and below: 38.1%

TOFHLA Older age 74% or less Fewer years of on TOFHLA: 30%

education

Continued

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72 HEALTH LITERACY

TABLE 3-2 Continued

Participation Citation Population Rate Study Design Setting

Davis et al., N = 396 96% — Pediatric clinic 1994 Parents or other in a public

caretakers hospital, accompanying Louisiana pediatric outpatients

Mean age: 30 years

Fortenberry N = 1035 78% — Clinics, et al., 2001 Mean age: community-

26.36 based organizations, and by street intercept in 4 sites (CO, IN, NY, and AL)

Gazmararian N = 3260 39% Cohort Prudential et al., 1999b New Medicare 3,260 Medicare

enrollees participated Managed 2,956 English out of 8,409 Care Study

speakers, identified 4 sites: 304 Spanish for study Cleveland, speakers OH,

Age distribution: Houston, TX, 65–69 years: south Florida,

37% and Tampa, 70–74 years: Florida

27.3% 75–79 years:

19.3% 80–84 years:

11% ≥ 85 years:

5.4%

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EXTENT AND ASSOCIATIONS 73

Reported Demographic Associations with

Measure Low Health Literacy Prevalence of Literacy Levels

Continued

REALM and — REALM WRAT-R 3rd and below: 11%

4th–6th: 16% 7th–8th: 37% 9th and above: 35%

WRAT Less than 4th: 31% Less than 7th: 55% Less than 9th: 73%

REALM — 8th and below: 35% 9th and above: 65%

S-TOFHLA African American race Total Older age English Spanish Fewer years of school Inadequate: 23.5% Inadequate: 34.2%

completed Marginal: 10.4% Marginal: 19.7% History of blue collar Adequate: 66.1% Adequate: 46.1%

occupations Older age was Cleveland, OH

strongly associated English with lower health Inadequate: 34.1% literacy, and this Marginal: 9.9% association Adequate: 56.0% remained after adjusting for years Houston, TX of school completed English Spanish and cognitive Inadequate: 28.0% Inadequate: 21.2% impairment Marginal: 9.4% Marginal: 19.2%

Adequate: 62.6% Adequate: 59.6%

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74 HEALTH LITERACY

TABLE 3-2 Continued

Participation Citation Population Rate Study Design Setting

Gazmararian N = 406 19% Cohort Medicaid managed et al., 1999a Women enrolled 406 care plan in

in a Medicaid participated Memphis, managed care out of 2,197 Tennessee plan identified

Age distribution: for study 19–24 years:

144 25–29 years:

86 ≥ 30 years:

175

Kalichman N = 228 — Convenience HIV clinics, AIDS et al., HIV-infected sample service 2000 adults organizations,

Mean age: social service 39.7 years agencies

Kalichman N = 182 — Convenience HIV clinics, AIDS et al., 1999 HIV-infected sample service

adults organizations, Mean age: social service

39.1 years agencies

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EXTENT AND ASSOCIATIONS 75

Continued

Reported Demographic Associations with

Measure Low Health Literacy Prevalence of Literacy Levels

South Florida English Spanish

Inadequate: 17.3% Inadequate: 34.3% Marginal: 11.6% Marginal: 20.3% Adequate: 71.1% Adequate: 45.4%

Tampa, FL English Spanish

Inadequate: 16.6% Inadequate: 60.0% Marginal: 10.2% Marginal: 16.0% Adequate: 73.2% Adequate: 24.0%

TOFHLA Lower education level 9.6% scored less than 80% on the (abbreviated Health literacy levels TOFHLA version) were not

significantly associated with age, race, marital status, employment status, and poverty status

TOFHLA Fewer years of TOFHLA Scores: education 0%–20%: 2%

Ethnic/minority status 21%–40%: 2% Health literacy level 41%–60%: 3%

was not related to 61%–80%: 11% age, income level, 81%–90%: 23% gender, or sexual 91%–100%: 59% orientation

TOFHLA 41% scored below 85% on the TOFHLA

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76 HEALTH LITERACY

TABLE 3-2 Continued

Participation Citation Population Rate Study Design Setting

Kaufman N = 61 — Convenience Public health et al., 2001 First-time sample clinic,

mothers aged Albuquerque, 18 years or NM older who had an infant between 2 and 12 months

Li et al., N = 55 (REALM 71% Convenience Clinic in the 2000 scores 39 patients sample rural south

available on participated 39) in REALM

Women with testing out early-stage of 55 breast cancer identified by

retrospective chart review

Lindau N = 529 91% Prospective Ambulatory et al., 2002 English-speaking Cohort Obstetrics

patients older and Gynecology than 18 years clinic and a

Median age: 27 women’s HIV clinic

Montalto and N = 70 38.% Rural community Spiegler, 2001 Female: health center

Mean age: 45 Male:

Mean age: 55

Schillinger N = 408 91% Cross-sectional Two primary care et al., 2002 English- and clinics, public

Spanish- hospital, San speaking Francisco, CA type-2 diabetes patients older than 30 years

(San Francisco General Diabetic Patients with Low Health Literacy Study)

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EXTENT AND ASSOCIATIONS 77

Continued

Reported Demographic Associations with

Measure Low Health Literacy Prevalence of Literacy Levels

REALM — 3rd and below: 0% 4th–6th: 0% 7th–8th: 36% 9th and above: 64%

REALM — 3rd and below: 0% 4th–6th: 12.8% 7th–8th: 12.8% 9th and above: 74.4%

REALM Non-white participant 6th and below: nearly 10% Those with no or 7th–8th: 33%

public health 9th and above: 61% insurance

TOFHLA Inadequate: 2.86% Marginal: 11.43% Adequate: 85.71%

S-TOFHLA Older age English Spanish Female gender Inadequate: 27.7% Inadequate: 56.8% Non-white Marginal: 12.7% Marginal: 14.2% Spanish-speakers Adequate: 59.6% Adequate: 29.9% Lower education level Medicare coverage Longer time with

diabetes

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78 HEALTH LITERACY

TABLE 3-2 Continued

Participation Citation Population Rate Study Design Setting

Shea et al., N = 2494 — Cohort Urban community- 2003. (Health literacy based practices Published and patient abstract satisfaction

study)

Weiss et al., N = 402 75% Cohort University Family 1994 Medicaid Care, a health

enrollees, care organization 21.6% Male, in Tucson, AZ 78.4% Female 45.8%

Hispanic 42.8%

Caucasian 5.5%

African American

Mean age: 49.0

Williams N = 483 ED = 79% Cohort ED and AC at et al., 273 from AC = 90% urban public 1998a emergency hospital,

department Atlanta, GA (ED)

210 from asthma clinic (AC)

ED Mean age: 37

AC Mean age: 47

Williams N = 516 94% (LA) Cohort General medical et al., Patients with 86% clinics of two 1998b hypertension (Atlanta) urban public

(n = 402) and hospitals patients with (Atlanta and diabetes Los Angeles) (n = 114)

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EXTENT AND ASSOCIATIONS 79

Continued

Reported Demographic Associations with

Measure Low Health Literacy Prevalence of Literacy Levels

S-TOFHLA — Inadequate: 25% Marginal: 11% Adequate: 65%

Instrument for Spanish-speaking 0: 8.7% the 1st: 4.7% Diagnosis 2nd: 5.1% of Reading/ 3rd: 5.6% Instrumento 4th: 4.2% Para 5th: 5.2% Diagnosticar 6th: 13.7% Lecturas 7th: 14.2% (IDL) 8th and above: 38.6%

REALM Older age 3rd and below: 13% 4th–6th: 27% 7th–8th: 33% 9th and above: 27%

TOFHLA Older age Diabetes patients* Hypertension Spanish-speaking Inadequate: 44% patients*

Marginal: 11% Inadequate: 49% Adequate: 45% Marginal: 12%

Adequate: 39% *results include both Spanish- and English-

speaking individuals

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80 HEALTH LITERACY

TABLE 3-2 Continued

Participation Citation Population Rate Study Design Setting

Williams N = 2,659 77.% Cohort Two urban public et al., 1995 Patients Atlanta, hospitals in

presenting for 84% Los Atlanta and acute care, Angeles Los Angeles 1892 English

speakers, 767 Spanish

speakers (Literacy in

Health Care study)

REALM: 4 levels: (1st–3rd, 4th–6th, 7th–8th, 9th and above). TOFHLA: Inadequate health literacy (score 0–59), marginal health literacy (score 60–74), adequate health literacy (score 75–100).

Gazmararian et al., 1999b; Schillinger et al., 2002; Williams et al., 1995, 1998a, b). Limited literacy and health literacy as measured by these studies in older adults is an important problem. Older individuals generate high health-care costs (Berk and Monheit, 2001). High health-care costs, in turn, are associated with limited literacy (see below for a detailed discussion). While older individuals have some of the highest rates of limited health literacy scores and limited functional literacy scores, they also have some of the most demanding health-care needs. Limited health literacy in older adults may contribute to a situation in which those most in need of health care may be those least able to access and benefit from the care.

Studies with current health literacy measures have reported that demo- graphic associations with limited health literacy include racial or ethnic minority status (Arnold et al., 2001; Beers et al., 2003; Bennett et al., 1998; Gazmararian et al., 1999b; Kalichman et al., 2000; Lindau et al., 2002; Schillinger et al., 2002), fewer years of schooling or lower education level (Beers et al., 2003; Benson and Forman, 2002; Gazmararian et al., 1999a, b; Kalichman et al., 2000; Schillinger et al., 2002), and being a Spanish- speaker (tested in Spanish; Weiss et al., 1994). Notably, these demographic groups identified by several assessments conducted in different settings are the same demographic groups identified by the NALS, discussed earlier. However, none of these studies have involved a sufficiently large random sample of adults that would allow us to extrapolate these findings to other populations.

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EXTENT AND ASSOCIATIONS 81

Reported Demographic Associations with

Measure Low Health Literacy Prevalence of Literacy Levels

TOFHLA Age 60 years or above Los Angeles Spanish-speaking English Spanish

Inadequate: 12.5% Inadequate: 41.9% Marginal: 9.5% Marginal: 19.8% Adequate: 78% Adequate: 38.3%

Atlanta Inadequate: 34.7% Marginal: 12.7% Adequate: 52.6%

S-TOFHLA: Inadequate health literacy (score 0–53), marginal health literacy (score 54–66), adequate health literacy (67–100). IDL: Grade level scores from 0 to 8, 0 indicating failure at grade level 1, 8 indicating read- ing comprehension at or above the 8th grade level.

THE ASSOCIATIONS OF LIMITED HEALTH LITERACY

Research study findings linking the presence of limited health literacy as currently measured to poor health are accumulating, although the causal relationship between health literacy and health is unknown. This research can be thought of as addressing two types of costs associated with limited health literacy: economic costs to society and the health-care system, and costs in terms of the human burden of disease. This section will review both peer-reviewed and new evidence of the association of limited health literacy as measured by the REALM or TOFHLA with health outcomes, health- related knowledge and behaviors, and economic costs. The personal costs of limited health literacy also bear consideration. Many adults overestimate their knowledge and understanding of health information, including in- structions for their own care (Davis et al., 1996; Doak et al., 1996). Others may be all too aware of their difficulty understanding health information. Limited health literacy may also take a psychological toll; one study found that those with limited health literacy as measured by the S-TOFHLA re- ported a sense of shame about their skill level (Parikh et al., 1996).

Finding 3-2 On the basis of limited studies, public testimony, and committee members’ experience the committee concludes that the shame and stigma associated with limited literacy skills are major barriers to improving health literacy.

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82 HEALTH LITERACY

Associations with Health Knowledge, Behavior, and Outcomes

Individuals with inadequate health literacy as currently measured re- port less knowledge about their medical conditions and treatment, worse health status, less understanding and use of preventive services, and a higher rate of hospitalization than those with marginal or adequate health literacy (for review, see Parker et al., 2003). Table 3-3 displays a sampling of studies that provide evidence of health-related associations with health literacy as measured by currently available assessments of print literacy in the health context. These studies were identified using the same methodol- ogy as described in the previous section.

A number of researchers examined relationships between patients’ scores on the REALM or TOFHLA, knowledge of illnesses, and chronic condition management. Studies included in Table 3-3 demonstrate that hypertension, diabetes, asthma, and HIV/AIDS patients with lower scores have less knowledge of their chronic illness and its management than those with higher scores (Kalichman et al., 2000; Schillinger et al., 2002; Will- iams et al., 1998a, b). Examination of health literacy scores and health-care management found that patients with limited health literacy as determined by current measures have a decreased ability to share in decision making about prostate cancer treatment (Kim et al., 2001), lower adherence to anticoagulation therapy (Lasater, 2003; Win and Schillinger, 2003), and worse glycemic control (Arnold et al., 2001; Kalichman and Rompa, 2000; Schillinger et al., 2002; Williams et al., 1998a, b).

As noted in Table 3-3, several studies have demonstrated a relationship between hospitalization rates and limited health literacy as measured by the TOFHLA or REALM (e.g., Baker et al., 1997, 2002a). For example, Gor- don and colleagues (2002) demonstrated that although rheumatoid arthri- tis patients of differing literacy levels had similar levels of rheumatoid arthritis-related dysfunction, those scoring lower on the REALM had sig- nificantly more hospital visits in the previous 12 months than age- and sex- matched controls with higher scores. Arozullah and colleagues (2002) in- vestigated the relationships between health literacy level, the preventability of hospital admissions, and the causes of preventable hospital admissions. Patients scoring at or below the third-grade level on the REALM had an increased risk (odds ratio (OR) = 8.5) of preventable admission as com- pared to those scoring at the ninth-grade level and above, while patients with fourth- to eighth-grade literacy had an OR for preventability of 2.5. Furthermore, preventable admissions among patients with literacy levels at or below sixth grade were more likely than preventable admissions among those with above sixth-grade literacy to be related to system-level factors such as the availability of outpatient diagnostic care.

Health literacy level has also been linked to self-reported health status. Baker and colleagues found that among both individuals at a public hospi-

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EXTENT AND ASSOCIATIONS 83

tal (1997) and in a Medicare managed care health plan (2002a), those with inadequate health literacy as determined by the TOFHLA were significantly more likely than patients with adequate health literacy scores to report their health as poor.

Health literacy levels may influence health status by affecting care- seeking behavior. A study by Bennett and colleagues (1998) indicated that individuals with lower health literacy scores on the REALM may enter the health-care system when they are sicker than those with higher health literacy scores; among men with prostate cancer, those scoring lower on the REALM were more likely to be initially diagnosed at a more advanced stage of disease than those with higher health literacy. However, this differ- ence was not statistically significant after adjustments for race, age, and location or care. Several studies have showed that individuals with lower health literacy scores are less likely than those with higher health literacy scores to make use of preventive health-care services. Scott and colleagues (2002) found that, among Medicare managed care enrollees, those with inadequate health literacy, as measured by the S-TOFHLA, used preventive health services (including influenza and pneumococcal vaccinations, mam- mogram, and Pap smear) less than enrollees with higher health literacy. Similarly, Fortenberry and colleagues (2001) administered the REALM test to 1,035 people in four sites across the country, and found that higher REALM scores were independently associated with gonorrhea testing in the previous year. In contrast, Moon and colleagues (1998) found no relation- ship between parental literacy levels, as measured by the REALM, and use of preventive health services for pediatric patients.

Finding 3-3 Adults with limited health literacy, as measured by read- ing and numeracy skills, have less knowledge of disease management and of health-promoting behaviors, report poorer health status, and are less likely to use preventive services.

While research in developing countries rarely examines health literacy, a number of studies have examined the association between literacy or reading levels and health outcomes. A Bolivian study found that children of individuals participating in health, literacy, or small business financing programs offered through an international non-governmental organization were at less risk of becoming malnourished than children from comparison communities (Gonzales et al., 1999). A World Bank study of the associa- tion between maternal educational attainment and child health in Morocco found that the mother’s health knowledge was associated with improved child health and nutrition (Glewwe, 1999). In contrast, a 10-year study of factors influencing infant and child health in Pakistan showed notable im- provements in indicators of health, including a 69 percent increase in vacci-

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84 HEALTH LITERACY

TABLE 3-3 Health-Related Associations of Health Literacy Skills

Participation Citation Population Rate Study Design Setting

Arnold N = 600 96% Convenience Obstetric clinics, et al., 2001 Pregnant women sample Louisiana

296 African American

303 Caucasian Mean age: 23

Baker et al., N = 2,787 37% Cohort Prudential 2002b Medicare 2,787 of 7,471 Medicare

enrollees selected managed care 354 African enrollees (4 sites)

American 2,343 Caucasian Mean age: 73

Baker et al., N = 3,260 44% Prospective Prudential 2002a Medicare 3,260 of 7,471 cohort Medicare

enrollees selected managed care 2,956 English enrollees (4 sites)

speakers 304 Spanish

speakers

Baker et al., N = 979 — Prospective Large public 1998 (Literacy in cohort hospital

Health Care emergency Study) department;

Atlanta

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EXTENT AND ASSOCIATIONS 85

Data Collection Method Health-Related Outcome Associations

REALM Participants scoring lower on the REALM Structured interview had less knowledge about the effects of Urine cotinine levels smoking and less concern about the Self-report of smoking practices health effects of smoking on their baby

than those with higher scores. REALM scores were not related to smoking

practices even when race, age, and living with a smoker were controlled.

S-TOFHLA Health literacy was linearly related to the Mini-Mental State Examination total MMSE score across the entire range

(MMSE) of S-TOFHLA scores. Self-report

S-TOFHLA Participants with inadequate and marginal Structured interview health literacy reported worse health MMSE status. They were also significantly more Geriatric Depression Scale likely to have been hospitalized than Short Form-12 Health Survey (SF-12), those with adequate health literacy. This

a measure of self-rated physical and relationship remained after adjusting for mental health demographics, income, schooling,

Managed care organization claims cognitive function, and social support. Spanish-speaking individuals at all literacy

levels had a lower risk of admission than English speakers.

TOFHLA Patients with inadequate literacy were Structured interview significantly more likely to be Grady Memorial Hospital information hospitalized one or more times than those

system with marginal or adequate literacy. This association remained after adjusting for age, gender, race, self-reported health, socioeconomic status, and health insurance.

Continued

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86 HEALTH LITERACY

TABLE 3-3 Continued

Participation Citation Population Rate Study Design Setting

Baker et al., N = 2,659 81% Prospective Two large public 1997 979 Atlanta cohort hospitals:

Los Angeles Atlanta and 913 English Los Angeles

speakers 767 Spanish

speakers (Literacy in Health Care Study)

Bennett N = 212 96% Convenience Prostate clinics in et al., 1998 Low-income men sample Shreveport, LA

109 African and Chicago, IL American

103 Caucasian Mean age:

70.8

Fortenberry N = 1,035 78% Convenience Clinics, et al., 2001 Mean age: 26 sample community-

based organizations, and by street intercept (4 states: CO, IN, NY, and AL)

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EXTENT AND ASSOCIATIONS 87

Continued

Data Collection Method Health-Related Outcome Associations

TOFHLA Participants with inadequate health literacy Interview were significantly more likely than

participants with adequate health literacy to report poor health. This association remained after controlling for age, gender, race, and socioeconomic indicators.

No relationship existed between literacy level and ambulatory care use after adjusting for age, health status, and economic indicators. At one of the study sites (Atlanta, GA), patients with inadequate literacy were more likely to have been hospitalized in the year preceding the study, and this relationship remained after controlling for age, gender, race, socioeconomic indicators, and self-reported health.

REALM Participants with literacy levels below the Medical record review sixth grade were significantly more likely Pathology reports to present with Stage D cancer than those

with higher literacy levels.

REALM After adjustment for missing REALM data, Structured interview a REALM score of ninth grade or higher

was independently associated with gonorrhea testing in the previous year. (Other independent predictors of testing were past suspicion of gonorrhea, self- inspection for gonorrhea, self-efficacy for care seeking, and younger age).

Participants scoring lower on the REALM rated themselves more likely to acquire gonorrhea in the next 12 months than those with higher REALM scores.

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88 HEALTH LITERACY

TABLE 3-3 Continued

Participation Citation Population Rate Study Design Setting

Gazmararian N = 406 19% Cohort Medicaid managed et al., 1999a Women enrolled 2,197 care, Memphis,

in health plan identified for Tennessee Age distribution: study: 1,061

19–24: 144 not located. 25–29: 86 ≥ 30: 175

Gazmararian N = 3,260 44% Cohort Prudential et al., 2000 New Medicare Medicare

enrollees managed care 2,956 English (4 sites)

speakers 304 Spanish

speakers 76% Caucasian

Gordon N = 123 96.8% Cross-sectional Arthritis clinic et al., 2002 Patients with

rheumatoid arthritis Median age: 56 years

Range: 19–77 years

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EXTENT AND ASSOCIATIONS 89

Continued

Data Collection Method Health-Related Outcome Associations

S-TOFHLA Higher rates of low health literacy were Interview observed among participants who had

ever used an intrauterine device, douching, rhythm, or levonorgestrel implants as methods of birth control than women who had used other methods of birth control.

Compared with women with good reading skills, women with low reading skills were 2.2 times (95% confidence interval [CI] 1.1, 4.4) more likely to want to know more about birth control methods and 4.4 times (95% CI 2.2, 9.0) more likely to have incorrect knowledge about when they were most likely to get pregnant. These relationships were significant after controlling for age, race, and marital status.

There was no relationship between health literacy levels and either pregnancy intendedness or current use of contraception.

S-TOFHLA Participants with inadequate health literacy Geriatric Depression Scale skills were significantly more likely to Interview report depressive symptoms than those

with adequate health literacy skills. However, this association was no longer significant after controlling for health status.

REALM REALM scores not related to disease Interview duration, numbers of joint replacements, Case record review or number of previous disease-modifying Health Assessment Questionnaire antirheumatic drugs. Hospital Anxiety and Depression Scale “Illiterate” patients had three times as Carstairs Index of social deprivation many hospital visits as controls in the

previous 12 months.

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90 HEALTH LITERACY

TABLE 3-3 Continued

Participation Citation Population Rate Study Design Setting

Guerra and N = 1,301 49% Convenience Four community- Shea, 2003. Patients over 18 sample and one Published years of age university-based Abstract insured by primary care

Medicaid or practice Medicare

Mean age: 42.2 (Health Literacy

and Patient Satisfaction Study)

Kalichman N = 228 Convenience HIV clinics, AIDS et al., 2000a HIV-positive sample service

adults organizations, Mean age: 40 social service

agencies

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EXTENT AND ASSOCIATIONS 91

Continued

Data Collection Method Health-Related Outcome Associations

TOFHLA Inadequate health literacy was significantly Charlson Comorbidity Index associated with greater comorbidity SF-12 Questionnaire burden, and this association remained

after adjusting for confounders. Inadequate functional health literacy was

not related to health status after adjusting for confounders.

TOFHLA Participants with lower health literacy were Questionnaire or interview significantly less likely than those with

higher health literacy: to report an undetectable HIV viral load, to indicate that they understand the meaning of viral load and CD4 cell counts, to state that their doctors ask their opinions about treatment, and to state that their doctors explain things to them so they understand.

Participants with lower health literacy were significantly more likely than those with higher health literacy: to visit a doctor at least once per month, to believe that HIV medications reduce HIV-transmission risk, to believe that it is safe to have sex if an HIV+ person has an undetectable viral load, to state that new HIV treatments make it easier to relax about unsafe sex, and to state that they practice more unsafe sex because of new treatments.

Health literacy level was not related to CD4 cell counts, amount of time since learning of HIV status, number of HIV-related symptoms, having diagnosed AIDS-related conditions, use of anti-HIV therapies, and some measures of treatment optimism.

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92 HEALTH LITERACY

TABLE 3-3 Continued

Participation Citation Population Rate Study Design Setting

Kalichman N = 339 — Convenience HIV clinics, AIDS and Rompa, HIV-positive sample service 2000 adults organizations,

Mean age: 40 social service agencies

Kalichman N = 182 — Convenience HIV clinics, AIDS et al., 1999 HIV-positive sample service

adults organizations, Mean age: 39.1 social service

agencies

Kaufman N = 61 — Convenience Public health et al., 2001 First-time sample clinic

mothers aged 18 years or older who spoke English as their first language and had an infant between 2 and 12 months

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EXTENT AND ASSOCIATIONS 93

Continued

Data Collection Method Health-Related Outcome Associations

Reading comprehension section of HIV-infected participants with lower health TOFHLA (lower literacy defined as literacy had lower CD4 cell counts, scoring at or below 80%, higher higher viral loads, were less likely to be literacy as scoring above 80%) taking antiretroviral medications,

Questionnaire or interview reported a greater number of hospitalizations, and reported poorer health than those with higher health literacy. After adjusting for years of formal education, lower health literacy was associated with poorer knowledge of one’s HIV-related health status, poorer AIDS-related disease and treatment knowledge, and more negative health-care perceptions and experiences.

Adapted reading comprehension Participants with fewer years of education section of TOFHLA (lower literacy and lower health literacy were defined as scoring 85% or below, significantly more likely to be non- higher literacy as scoring above adherent in the past 2 days than those 85%) with higher health literacy, and this

Interview association remained after controlling for Questionnaire/survey age, ethnicity, income, HIV symptoms,

substance abuse, social support, emotional distress, and attitudes toward primary care providers. Persons of low literacy were more likely to miss treatment doses because of confusion, depression, and desire to cleanse their body than were participants with higher health literacy.

REALM (higher health literacy defined Participants with higher health literacy were as high school level or above, and significantly more likely than those with lower health literacy as seventh- lower health literacy to initiate and eighth-grade level) sustain breastfeeding during the first 2

Survey months.

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94 HEALTH LITERACY

TABLE 3-3 Continued

Participation Citation Population Rate Study Design Setting

Lindau N = 529 91% Prospective Ambulatory et al., 2002 English-speaking cohort OBGYN clinic

patients older and a women’s than 18 years HIV clinic

Median age: 27 58% African-

American 18% Hispanic

Moon et al., N = 543 85.8% Prospective Pediatric acute 1998 Parents cohort care clinic

accompanying children to clinic

Mean age: 32

Parikh et al., N = 202 65% Cohort Emergency 1996 Patients from department and

Literacy in walk-in clinic, Health Care Atlanta, GA Study

Mean age: 41 92% African

American

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EXTENT AND ASSOCIATIONS 95

Continued

Data Collection Method Health-Related Outcome Associations

REALM Health literacy level was the only factor Interview independently associated with knowledge Chart review related to cervical cancer screening. This Physician survey association remained after controlling for

education, employment, ethnicity, insurance, and age.

Participants with inadequate and marginal health literacy were significantly more likely than those with adequate health literacy to: state that they would seek care for an illness in an emergency department or acute care facility (11% vs. 3%); not seek medical care if informed of an abnormal Pap test (30% vs. 19%).

REALM REALM score significantly correlated with Interview parental perception of how sick the child

was. No relationship between REALM score and use of preventive services, comprehension of diagnosis, medication name and instructions, or ability to obtain and administer prescribed medicines.

TOFHLA 67.4% of participants with inadequate or Survey marginal health literacy stated that they Interview had trouble reading and understanding

what they read. 39.7% of these participants acknowledged they have shame about their reading difficulty. Of the participants who had low functional health literacy and admitted having trouble reading, 67.2% had never told their spouses, and 53.4% had never told their children of their difficulties reading. Nineteen percent had never disclosed their difficulty reading to anyone.

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96 HEALTH LITERACY

TABLE 3-3 Continued

Participation Citation Population Rate Study Design Setting

Schillinger N = 74 71% Cohort 2 primary care et al., 2003 English-speaking clinics, public

patients with hospital, San diabetes Francisco, CA mellitus and low functional health literacy

Mean age: 64 85% non-white (San Francisco

General Diabetic Patients with Low Health Literacy Study)

Schillinger N = 408 91% Cross-sectional Two primary care et al., 2002 English- and clinics, public

Spanish- hospital, San speaking Francisco, CA type-2 diabetes patients older than 30 years

(San Francisco General Diabetic Patients with Low Health Literacy Study)

Scott et al., N = 2,722 36% Cohort Prudential 2002 New Medicare Medicare

enrollees managed care between 65 (4 sites) and 80 years Cleveland, old Houston,

Mean age: 71 Tampa, or South Florida

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EXTENT AND ASSOCIATIONS 97

Continued

Data Collection Method Health-Related Outcome Associations

S-TOFHLA After a multivariate logistic regression, 2 Audiotaped patient-physician variables were independently associated

interaction with good glycemic control among a group of diabetes patients with low health literacy: higher health literacy levels, and physicians’ use of an interactive communication strategy.

S-TOFHLA After adjusting for patients’ Diabetes care profile social support sociodemographic characteristics,

scale depressive symptoms, social support, Short form of the Center for treatment regimen, and years with

Epidemiologic Studies Depression diabetes, three variables were Scale independently associated with HbA1c

Interview level: health literacy level, insurance Hospital database status, and treatment regimen.

Patients with inadequate health literacy were less likely than those with adequate health literacy to achieve tight glycemic control and were more likely to have to report having retinopathy.

S-TOFHLA Inadequate health literacy was Interview independently associated with lower use

of preventive health services including receiving the influenza and pneumococcal vaccinations, mammogram, or a Pap smear. This association remained significant after adjusting for demographics, years of school completed, income, number of physician visits, and health status.

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98 HEALTH LITERACY

Shea et al., N = 2,494 — Cohort Urban 2003 62% Hispanic community- Published 78% female based practices Abstract 50% younger

than 40 (Health Literacy

and Patient Satisfaction Study)

Weiss et al., N = 402 75% Cohort University Family 1994 Adult Medicaid Care, a health-

enrollees care organization 78.% Female Tucson, AZ 46% Hispanic 43% Caucasian Mean age: 49

Williams et al., 1998a N = 483 90% Cohort Emergency

273 from department and emergency asthma clinic at department urban public Mean age: 37 hospital,

210 from Atlanta, GA asthma clinic Mean age: 47

Williams et al., 1998b N = 516 94% (Los Cohort Two urban public

402 patients Angeles) hospitals in Los with 86% (Atlanta) Angeles and hypertension Atlanta and 114 patients with diabetes

TABLE 3-3 Continued

Participation Citation Population Rate Study Design Setting

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EXTENT AND ASSOCIATIONS 99

S-TOFHLA Health literacy level was a significant Interview predictor of reported satisfaction in all Consumer Assessment of Health Plans subscale and overall satisfaction scores,

Survey (CAHPS) in 3 different and this relationship remained when formats: written, with supporting controlling for demographic factors and illustrations, and an automated the type of CAHPS instrument given. telephone survey

Instrument for the Diagnosis of There was no significant relationship Reading between literacy and health-care costs.

University Famili Care Records

REALM Reading level was the strongest predictor of Interview asthma knowledge score in a multivariate Observation of Metered dose inhaler analysis. Poor MDI technique was found

(MDI) technique in 89% of patients reading at less than the third-grade level compared with 48% of patients reading at the high school level. Reading level was the strongest predictor of MDI technique in multivariate regression analyses.

TOFHLA (in either English or Spanish) Participants with inadequate or marginal Interview functional health literacy and either

hypertension or diabetes had significantly less knowledge of their disease than those with adequate functional health literacy. There were no significant relationships between health literacy and measures of outcome (blood pressure, or HbA1c level).

Data Collection Method Health-Related Outcome Associations

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100 HEALTH LITERACY

nation rates, although the numbers of literate women did not change and there was a 12 percent increase in the number of literate men. This study also suggests that health behaviors may improve as a result of changes in health-care delivery without improvements in individual literacy (Northrop- Clewes et al., 1998).

Financial Associations of Low Health Literacy

The limited information available suggests that limited health literacy may be associated with increased consumer, health provider, and the health- care system costs. Weiss and colleagues (1994) initially found no associa- tion between literacy skills, as measured by grade-equivalent reading level, and total 1-year health-care charges in 402 randomly selected Arizona Medicaid enrollees. The relationship between costs incurred and reading level as assessed by the IDL in the 72 patients in the original sample who were not seeking prenatal care was reanalyzed since 330 patients in this study were receiving prenatal care that had a fixed cost. The health-care costs of the remaining 72 patients showed greater variation. Consistent with REALM scoring, which categorizes the lowest reading group as third grade and under, the authors divided the sample at grade 3. Patients with a reading level at or below third grade had mean Medicaid charges of $10,688, while patients who read above the third-grade level had mean charges of $2,891 (p = 0.025) (Weiss and Palmer, 2004).

Friedland (1998) presented an analysis of the association of literacy and health-care utilization using data from the Health Care Financing Ad- ministration,6 the NALS, and the Survey of Income and Program Participa- tion. This estimate was derived from predicted levels of functional literacy and estimates of health-care use. Differences in health-care spending were estimated by comparing health-care utilization by people with a lower probability of having functional literacy skills to health-care utilization by people those with a higher probability of having functional literacy skills. Friedland suggested that the additional health-care resource attributable to inadequate health literacy (NALS Level 1) in 1996 was $29 billion if inad- equate health literacy was equivalent to inadequate literacy, and would have grown to $69 billion if even half of the marginally literate (NALS Level 2) were also considered not health literate (Friedland, 1998). This estimate has been cited elsewhere and, while illustrating the depth of the problem of limited health literacy, does not directly address the issue of cost.7

6HCFA, now the Centers for Medicare & Medicaid Services. 7The committee thanks Robert Friedland, Ph.D., for his contributions to this section of the

report.

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EXTENT AND ASSOCIATIONS 101

Associations of patient literacy with health-care utilization were exam- ined by Baker and colleagues (1998, 2002a). Two analyses showed that limited literacy patients have higher rates of hospitalization that may be associated with greater resource use. Of 979 patients seen in the emergency department of Grady Memorial Hospital (Atlanta) in 1994–1995, logistic regression showed that those with inadequate health literacy, as measured by the TOFHLA, were more likely to be hospitalized (31.5 percent) than patients with adequate health literacy (14.9 percent). The OR after adjust- ing for confounding variables was 1.69. The adjusted relative risk increased to 3.15 among patients with inadequate literacy who had been hospitalized in the previous year (Baker et al., 1998). More recently, Baker and col- leagues (2002a) studied a prospective cohort of 3,260 Medicare managed care enrollees. Of the 29 percent of these patients hospitalized over a 2-year period, the risk of admission was inversely related to health literacy as measured by the S-TOFHLA. The adjusted relative risk of admission was 1.29 for those with inadequate literacy and 1.21 for those with marginal literacy; however, it should be noted that education was not controlled for in this study.

Jose, a Bolivian man in his early 30s, stayed after class one night so I could help him understand a hospital bill. He had been having bad headaches for some time. Thinking it was his only option for care, he had gone to the emergency department to get treatment. There he was told the headaches would clear up if he got glasses. He was charged $300 for this diagnosis (Singleton, 2002).

For the purpose of this Institute of Medicine report, the committee commissioned an examination of the expenditure data collected in associa- tion with the Baker et al. (2002a) study from David Howard, a health economist at Emory University.8 Using econometric regression techniques, Howard found that predicted inpatient spending for persons with inad- equate health literacy, as measured by the S-TOFHLA, was $993 higher than that of persons with adequate health literacy. This difference fell to $450 after controlling for health status. It is not clear whether this control is appropriate as there may be a bidirectional relationship between literacy and health status. Emergency care costs incurred by individuals with inad-

8The information in this section is drawn from the background paper “The Relationship Between Health Literacy and Medical Costs,” commissioned by the committee from David H. Howard, Ph.D. The committee appreciates his contribution. The full text of the paper can be found in Appendix B of this report.

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102 HEALTH LITERACY

equate health literacy scores were higher than in patients with adequate literacy, while pharmacy expenses were similar in both groups and outpa- tient expenditures were lower. Although this Medicare managed care sample is not representative of the U.S. population as a whole, the results are consistent with previous reports that limited-literacy individuals make greater use of services designed to treat complications of disease and fewer services designed to prevent complications (Baker et al., 1998, 2002; Gor- don et al., 2002; Scott et al., 2002).

These data suggest that patients with limited literacy may interact with a complex health-care system in ways that interfere with ideal utilization patterns and therefore could be more expensive. However, since the causal relationships between literacy and health-care utilization and cost have not been discovered, it is not possible to establish a valid cost figure for the impact of limited health literacy. If the magnitudes suggested by Howard and Friedland approach the actual costs, they clearly underscore the impor- tance of addressing this risk factor from a financial perspective, in addition to health outcome implications. More research is needed to expand these limited results and move to a clearer estimation of these effects.

Finding 3-4 Two recent studies demonstrate a higher rate of hospital- ization and use of emergency services among patients with limited literacy. This higher utilization has been associated with higher health-care costs.

Finding 3-1 About 90 million adults, an estimate based on the 1992 NALS, have literacy skills that test below high school level (NALS Level 1 and 2). Of these, about 40–44 million (NALS Level 1) have difficulty finding information in unfamiliar or complex texts such as newspaper articles, editorials, medicine labels, forms, or charts. Because the medical and public health literature indicates that health ma- terials are complex and often far above high school level, the committee notes that approximately 90 million adults may lack the needed literacy skills to effectively use the U.S. health system. The majority of these adults are native-born English speakers. Literacy levels are lower among the elderly, those who have lower edu- cational levels, those who are poor, minority populations, and groups with limited English proficiency such as recent immigrants.

Finding 3-2 On the basis of limited studies, public testimony, and committee members’ experience, the committee concludes that the shame and stigma asso- ciated with limited literacy skills are major barriers to improving health literacy.

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EXTENT AND ASSOCIATIONS 103

REFERENCES

Arnold CL, Davis TC, Berkel HJ, Jackson RH, Nandy I, London S. 2001. Smoking status, reading level, and knowledge of tobacco effects among low-income pregnant women. Preventive Medicine. 32(4): 313–320.

Arozullah AM, Lee SY, Khan T, Kurup S. 2002. Low health literacy increases the risk of preventable hospital admission. Abstract presented at the Midwest Regional Meeting of the Society of General Internal Medicine. September 26–28, 2002: Chicago, IL.

Baker DW, Parker RM, Williams MV, Clark WS, Nurss J. 1997. The relationship of patient reading ability to self-reported health and use of health services. American Journal of Public Health. 87(6): 1027–1030.

Baker DW, Parker RM, Williams MV, Clark WS. 1998. Health literacy and the risk of hospital admission. Journal of General Internal Medicine. 13(12): 791–798.

Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. 1999. Development of a brief test to measure functional health literacy. Patient Education and Counseling. 38: 33–42.

Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J. 2002a. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. American Journal of Public Health. 92(8): 1278–1283.

Baker DW, Gazmararian JA, Sudano J, Patterson M, Parker RM, Williams DW. 2002b. Health literacy and performance on the Mini-Mental State Examination. Aging and Mental Health. 6(1): 22–29.

Balsa AI, McGuire TG. 2001. Statistical discrimination in health care. Journal of Health Economics. 20(6): 881–907.

Beers BB, McDonald VJ, Quistberg DA, Ravenell KL, Asch DA, Shea JA. 2003. Disparities in health literacy between African American and non-African American primary care pa- tients. Abstract. Journal of General Internal Medicine. 18(Supplement 1): 169.

Finding 3-3 Adults with limited health literacy, as measured by reading and nu- meracy skills, have less knowledge of disease management and of health-promot- ing behaviors, report poorer health status, and are less likely to use preventive services.

Finding 3-4 Two recent studies demonstrate a higher rate of hospitalization and use of emergency services among patients with limited literacy. This higher utiliza- tion has been associated with higher health-care costs.

Recommendation 3-1 Given the compelling evidence noted above, funding for health-literacy research is urgently needed. The Department of Health and Human Services, especially the National Institutes of Health, the Agency for Healthcare Research and Quality, the Health Resources and Services Administrations, and the Centers for Disease Control and Prevention; the Department of Defense; the Veterans Administration; and other public and private funding agencies should support multidisciplinary research on the extent, associations, and consequences of limited health literacy, including studies on health service utilization and expen- ditures.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

104 HEALTH LITERACY

Bennett CL, Ferreira MR, Davis TC, Kaplan J, Weinberger M, Kuzel T, Seday MA, Sartor O. 1998. Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. Journal of Clinical Oncology. 16(9): 3101–3104.

Benson JG, Forman WB. 2002. Comprehension of written health care information in an affluent geriatric retirement community: Use of the test of functional health literacy. Gerontology. 48(2): 93–97.

Berk ML, Monheit AC. 2001. The concentration of health care expenditures, revisited. Health Affairs. 20(2): 9–18.

Comings JP, Reder S, Sum A. 2001. Building a Level Playing Field: The Need to Expand and Improve the National and State Adult Education and Literacy Systems. NCSALL Re- port. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.

Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, Crouch MA. 1993. Rapid estimate of adult literacy in medicine: A shortened screening instrument. Family Medicine. 25(6): 391–395.

Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. 1994. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 93(3): 460–468.

Davis TC, Arnold C, Berkel HJ, Nandy I, Jackson RH, Glass J. 1996. Knowledge and attitude on screening mammography among low-literate, low-income women. Cancer. 78(9): 1912–1920.

Doak CC, Doak LG, Root J. 1996. Teaching Patients with Low Literacy Skills. 2nd edition. New York: Lippincott.

Fortenberry JD, McFarlane MM, Hennessy M, Bull SS, Grimley DM, St Lawrence J, Stoner BP, VanDevanter N. 2001. Relation of health literacy to gonorrhoea related care. Sexu- ally Transmitted Infections. 77(3): 206–211.

Friedland R. 1998. New estimates of the high costs of inadequate health literacy. In: Proceed- ings of Pfizer Conference “Promoting Health Literacy: A Call to Action.” October 7–8, 1998, Washington, DC: Pfizer, Inc. Pp. 6–10.

Gazmararian JA, Parker RM, Baker DW. 1999a. Reading skills and family planning knowl- edge and practices in a low-income managed-care population. Obstetrics & Gynecol- ogy. 93(2): 239–244.

Gazmararian JA, Baker DW, Williams MV, Parker RM, Scott T, Greemn DCFSN, Ren J, Koplan JP. 1999b. Health literacy among Medicare enrollees in a managed care organi- zation. Journal of the American Medical Association. 281(6): 545–551.

Gazmararian J, Baker D, Parker R, Blazer DG. 2000. A multivariate analysis of factors associated with depression: Evaluating the role of health literacy as a potential contribu- tor. Archives of Internal Medicine. 160(21): 3307–3314.

Glewwe P. 1999. Why does mother’s schooling raise child health in developing countries? Evidence from Morocco. Journal of Human Resources. 34(1): 124–159.

Gonzales F, Dearden K, Jimenez W. 1999. Do multi-sectoral development programmes affect health? A Bolivian case study. Health Policy & Planning. 14(4): 400–408.

Gordon MM, Hampson R, Capell HA, Madhok R. 2002. Illiteracy in rheumatoid arthritis patients as determined by the Rapid Estimate of Adult Literacy in Medicine (REALM) score. Rheumatology. 41(7): 750–754.

Greenberg E, Macias RF, Rhodes D, Chan T. 2001. English Literacy and Language Minori- ties in the United States. NCES 2001-464. Washington, DC: National Center for Educa- tion Statistics. U.S. Department of Education. [Online]. Available: http://www.nces.ed. gov/pubs2002/2002382.pdf [accessed: June 5, 2003].

Greenberg, J. 2001. An Updated Overview of Medical and Public Health Literature Address- ing Literacy Issues: An Annotated Bibliography of Articles Published in 2000. [Online]. Available: http://www. hsph.harvard.edu/healthliteracy/literature/lit_2000.html [ac- cessed: October, 2003].

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

EXTENT AND ASSOCIATIONS 105

Guerra CE, Shea JA. 2003. Functional health literacy, comorbidity and health status. Ab- stract. Journal of General Internal Medicine. 18(Supplement 1): 174.

Haigler KO. 1994. Literacy Behind Prison Walls. Profiles of the Prison Population from the National Adult Literacy Survey. Washington, DC: U.S. Government Printing Office. [Online]. Available: http://www.nces.ed.gov/pubs2002/2002382.pdf [accessed: June 5, 2003].

Hegerfeld M. 1999. Reading, Writing, and the American Soldier: A Study of Literacy in the American Armed Forces. Fort Wayne, IN: Department of Education, Indiana Univer- sity–Purdue University at Fort Wayne.

Kalichman SC, Rompa D. 2000. Functional health literacy is associated with health status and health-related knowledge in people living with HIV-AIDS. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology. 25(4): 337–344.

Kalichman SC, Benotsch E, Suarez T, Catz S, Miller J, Rompa D. 2000. Health literacy and health-related knowledge among persons living with HIV/AIDS. American Journal of Preventive Medicine. 18(4): 325–331.

Kalichman SCP, Ramachandran BB, Catz SP. 1999. Adherence to combination antiretroviral therapies in HIV patients of low health literacy. Journal of General Internal Medicine. 14(5): 267–273.

Kaufman H, Skipper B, Small L, Terry T, McGrew M. 2001. Effect of literacy on breast- feeding outcomes. Southern Medical Journal. 94(3): 293–296.

Kim SP, Knight SJ, Tomori C, Colella KM, Schoor RA, Shih L, Kuzel TM, Nadler RB, Bennett CL. 2001. Health literacy and shared decision making for prostate cancer pa- tients with low socioeconomic status. Cancer Investigation. 19(7): 684–691.

Kirsch IS. 2001. The International Adult Literacy Survey (IALS): Understanding What Was Measured. Princeton, NJ: Educational Testing Service.

Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. 1993. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey (NALS). Washington, DC: National Center for Education Statistics, U.S. Department of Education.

Lasater L. 2003. Patient literacy, adherence, and anticoagulation therapy outcomes: A pre- liminary report. Abstract. Journal of General Internal Medicine. 18(Supplement 1): 179.

Li BDL, Brown WA, Ampil FL, Burton GV, Yu H, McDonald JC. 2000. Patient compliance is critical for equivalent clinical outcomes for breast cancer treated by breast-conservation therapy. Annals of Surgery. 231(6): 883–889.

Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL, Garcia P. 2002. The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. American Journal of Obstetrics & Gynecology. 186(5): 938–943.

Mayer GG. 2003. Confessions of a health illiterate. Healthcare Advances. 5(2): 2. Montalto NJ, Spiegler GE. 2001. Functional health literacy in adults in a rural community

health center. West Virginia Medical Journal. 97(2): 111–114. Moon RY, Cheng TL, Patel KM, Baumhaft K, Scheidt PC. 1998. Parental literacy level and

understanding of medical information. Pediatrics. 102(2): e25. Morse L. 2002. Improving Health Literacy: An Educational Response to a Public Health

Problem. Presentation given at a workshop of the Institute of Medicine Committee on Health Literacy. December 11, 2002, Washington, DC.

Northrop-Clewes CA, Ahmad N, Paracha PI, Thurnham DI. 1998. Impact of health service provision on mothers and infants in a rural village in North West Frontier Province, Pakistan. Public Health Nutrition. 1(1): 51–59.

Organization for Economic Co-operation and Development and Statistics Canada. 2000. Literacy in the Information Age: Final Report of the International Adult Literacy Sur- vey. Statistics Canada Catalogue no. 89-571-XPE. Paris: Organization for Economic Co-operation and Development and Ottawa: Minister of Industry.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

106 HEALTH LITERACY

Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. 1996. Shame and health literacy: The unspoken connection. Patient Education and Counseling. 27(1): 33–39.

Parker RM, Baker DW, Williams MV, Nurss JR. 1995. The Test of Functional Health Lit- eracy in Adults: A new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine. 10(10): 537–541.

Parker RM, Ratzan SC, Lurie N. 2003. Health literacy: A policy challenge for advancing high-quality health care. Health Affairs. 22(4): 147.

Profiles of State Programs. 1990. Profiles of State Programs: Adult Education for the Home- less. Washington, DC: Division of Adult Literacy and Education, U.S. Department of Education.

Rudd R, Moeykens BA, Colton TC. 2000a. Health and literacy. A review of medical and public health literature. In: Annual Review of Adult Learning and Literacy. Comings J, Garners B, Smith C, Editors. New York: Jossey-Bass.

Rudd RE, Colton T, Schacht R. 2000b. An Overview of Medical and Public Health Litera- ture Addressing Literacy Issues: An Annotated Bibliography. Report #14. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.

Rudd RE, Kirsch I, Yamamoto K. 2003. Literacy in health contexts: A re-analysis of the NALS. In: Clear Health Communications: Issues and Solutions, Session 4182.1. Wash- ington, DC: American Public Health Association Annual Conference.

Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GaD, Bindman AB. 2002. Association of health literacy with diabetes outcomes. Journal of the American Medical Association. 288(4): 475–482.

Schillinger D, Piette J, Grumbach K, Wang F, Wilson C, Daher C, Leong-Grotz K, Castro C, Bindman AB. 2003. Closing the loop: Physician communication with diabetic patients who have low health literacy. Archives of Internal Medicine. 163(1): 83–90.

Scott TL, Gazmararian JA, Williams MV, Baker DW. 2002. Health literacy and preventive health care use among Medicare enrollees in a managed care organization. Medical Care. 40(5): 395–404.

Shea JA, Guerra C, Weiner J, Aguirre A, Schaffer M, Asch DA. 2003. Health literacy and patient satisfaction. Journal of General Internal Medicine. 18(Supplement 1): 187–188.

Shinagawa S, Foong HL. 2003. Health literacy challenges for Asian Americans and Native Hawaiians and other Pacific Islanders. Supplement to oral testimony presented at a workshop of the Institute of Medicine Committee on Health Literacy. February 13, 2003, Irvine, CA.

Singleton K. 2002. ESOL Teachers: Helpers in health care. Focus on Basics: Connecting Research Practice. 5(C): 26–30.

Sum A, Kirsch IS, Taggart R. 2002. The twin challenges of mediocrity and inequality: Lit- eracy in the U.S. from an international perspective. In: Policy Information Report. Princeton, NJ: Educational Testing Service.

U.S. Census Bureau. 2002. Race and Hispanic or Latino Origin by Age and Sex for the United States: 2000 (PHC-T-8). Washington, DC: U.S. Census Bureau. [Online]. Avail- able: http://www.census.gov/population/www/cen2000/phc-t08.html [accessed: Decem- ber 9, 2003].

U.S. Department of Education. 2001. English Literacy and Language Minorities in the United States. Greenberg E, Macias RF, Rhodes D, Chan T, Editors. NCES 2001-464. Wash- ington, DC: National Center for Health Statistics.

Weiss BD. 1999. How common is low literacy? In: 20 Common Problems in Primary Care. Weiss BD, Editor. New York: McGraw-Hill. Pp. 468–481.

Weiss BD, Palmer R. 2004. Relationship between health care costs and very low literacy skills in a medically needy and indigent Medicaid population. Journal of the American Board of Family Practice. 17(1): 44–47.

Copyright © National Academy of Sciences. All rights reserved.

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Weiss BD, Blanchard JS, McGee DL, Hart G, Warren B, Burgoon M, Smith KJ. 1994. Illit- eracy among Medicaid recipients and its relationship to health care costs. Journal of Health Care for the Poor & Underserved. 5(2): 99–111.

Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K, Coates WC, Nurss JR. 1995. Inadequate functional health literacy among patients at two public hospitals. Journal of the American Medical Association. 274(21): 1677–1682.

Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. 1998a. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 114(4): 1008–1015.

Williams MV, Baker DW, Parker RM, Nurss JR. 1998b. Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hyper- tension and diabetes. Archives of Internal Medicine. 158(2): 166–172.

Win K, Schillinger D. 2003. Understanding of warfarin therapy and stroke among ethnically diverse anticoagulation patients at a public hospital. Abstract. Journal of General Inter- nal Medicine. 18(Supplement 1): 278.

Young BA. 2002. Public High School Dropouts and Completers from the Common Core of Data: School Years 1998–99 and 1999–2000. NCES 2002-382. Washington, DC: Na- tional Center for Education Statistics. U.S. Department of Education. Office of Educa- tional Research and Improvement. [Online]. Available: http://www.nces.ed.gov/ pubs2002/2002382.pdf [accessed: June 5, 2003].

Zobel E, Rowe K, Gomez-Mandic C. 2003. An Updated Overview of Medical and Public Health Literature Addressing Literacy Issues: An Annotated Bibliography of Articles Published in 2002. [Online]. Available: http://www.hsph.harvard.edu/health literacy/literature/lit_2002.html [accessed: October, 2003].

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108

4

Culture and Society

Escorted by his teenage granddaughter, an elderly old Navajo grandfather was taken to the internal medicine clinic for an infection in his right leg. The granddaughter was fluent in English but had very limited Navajo speaking skills. Speaking in English, the doctor informed the man that the infection in his leg would get worse if he did not take his medication as prescribed. The granddaughter could not translate the scientific concept of infection into Navajo language. The doctor asked one of the nurses for help, and although the she tried as much as she could, she also was unsuccessful. The old man, becoming frustrated, just agreed that he understood everything that he had been told. He told the nurse he wanted to have a traditional ceremony performed for him within a couple of days, and for her to tell the doctor. The nurse translated this to the doctor, who restated the importance of taking the medicines. The grandfather insisted he understood, but in fact because he felt that he did not understand the physician’s explanation, he decided to go to a traditional medicine man instead. The medicine man helped him the best he could, but the grandfather’s leg had to be amputated, which the doctor ascribed to noncompliance.

Our understanding of health literacy gains greater depth and mean- ing in the context of culture. This is especially important given the ethnic and linguistic diversity of the U.S. population. In addition

to 211,460,626 Americans of European decent, the 2000 U.S. Census iden-

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CULTURE AND SOCIETY 109

tified 69,961,280 people from 19 other ethnic and cultural groups living in America (U.S. Census Bureau, 2000). Many of these diverse American popu- lations have differing systems of belief about health and illness. Cultural health beliefs affect how people think and feel about their health and health problems, when and from whom they seek health care, and how they respond to recommendations for lifestyle change, health-care interventions, and treatment adherence.

Cultures also differ in their styles of communication, in the meaning of words and gestures, and even in what can be discussed regarding the body, health, and illness. Health literacy requires communication and mutual understanding between patients and their families and health-care provid- ers and staff. Culture and health literacy both influence the content and outcomes of health-care encounters.

A definition of health literacy that does not recognize the potential effect of cultural differences on the communication and understanding of health information would miss much of the deeper meaning and purpose of literacy for people (Nutbeam, 2000). Culture provides a context through which meaning is gained from information, and provides the purpose by which people come to understand their health status and comprehend op- tions for diagnoses and treatments. A conceptual understanding of the interconnections between culture and literacy through the idea of cultural literacy can provide insights into the deeper meanings of how diverse popu- lations in the United States come to know, comprehend, and make in- formed decisions based on valid data regarding their health.

This intersection between culture and literacy is recognized in the U.S. Department of Health and Human Services (HHS) National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health Care. The standard states that “health care organizations must make available easily understood patient-related materials . . . in the languages of com- monly encountered groups . . .” (HHS, 2001: 11). The standard goes on to state explicitly that in addition to being culturally responsive, these materi- als need also be responsive to the literacy levels of patients and consumers. Issues of culture, language, and learning are interrelated, and to be effec- tive, health education must be conducted in both culturally and linguisti- cally appropriate formats to address the increasingly diverse multicultural and multilingual population (AMA Ad Hoc Committee on Health Literacy, 1999).

Cultural, social, and family influences shape attitudes and beliefs and therefore influence health literacy. Social determinants of health are well documented regarding the conditions over which the individual has little or no control but that affect his or her ability to participate fully in a health- literate society. Native language, socioeconomic status, gender, race, and ethnicity along with mass culture as represented by news publishing, adver-

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110 HEALTH LITERACY

tising, marketing, and the plethora of health information sources available through electronic channels are also integral to the social–cultural land- scape of health literacy.

Traditional and mass culture and society provide a lens through which individuals perceive the mix of opportunities and underlying values and assumptions inherent in the health system. Society influences individuals and collectivities such as families, communities, and professional groups. Social factors work through social networks as well as through government programs, legislation, and private-sector markets. They are reflected in and shaped by the media. They are manifested through access to agency and organizational programs. A wide variety of social factors produce and diffuse information or misinformation, shape bias, develop and support health-promoting or -degrading environments, and provide normative pres- sures. These influence the actions of individuals, collectivities, and the spe- cialized groups of public health and care providers and therefore suggest critical intervention points.

TRADITIONAL CULTURE

Culture is the shared ideas, meanings, and values acquired by individu- als as members of society. It is socially learned, not genetically transmitted, and often influences us unconsciously. Human beings learn through social means—through interactions with others as well as through the products of culture such as books and television (IOM, 2002). Reliance on tools and symbolic resources, notably language, is a hallmark of culture. Language is central to social life and mediates the acquisition of much cultural knowl- edge. Language “provides the most complex system of the classification of experience” and is “the most flexible and most powerful tool developed by humans” (Duranti, 1997: 49 and 47). Differences in languages and under- lying concepts may lead to problems with health-related communication. For example, translating the word “chemotherapy” into the Navajo lan- guage might require pages of text. Since the Navajo language has no word or concept for chemotherapy, the translation must start with the idea of cancer, and include what the person might experience as a result of chemo- therapy. This is further complicated by the fact that many Navajos believe that if you say something will happen, it will1 (Billie, 2003).

Beyond the differences of language, culture gives significance to health information and messages. Perceptions and definitions of health and illness, preferences, language and cultural barriers, care process barriers, and ste- reotypes are all strongly influenced by culture and can have a great impact

1The committee thanks Alvin Billie for his contributions to this section of the report.

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on health literacy and health outcomes. Differing cultural and educational backgrounds among patients and providers, as well as among those who create health information and those who use it, contribute to problems with health literacy. The relationship between culture, patient–provider interac- tion, and quality of care has been reviewed by Cooper and Roter (2003). Early work showed that European-American cultural groups used language differently in discussing symptoms such as pain (Zborowski, 1952; Zola, 1966). These linguistic differences were associated with differences in diag- noses, irrespective of symptomology. African-American patients frequently experience shorter physician–patient interactions and less patient-centered visits than Caucasian patients (Cooper and Roter, 2003; Cooper-Patrick et al., 1999).

It is crucial to note that culture is not static for individuals or for societies. This dynamic principle of culture is referred to as “cultural pro- cesses” when groups are discussed, and “lived experiences” in the case of individuals. Individuals are shaped by their life experiences and are exposed to multiple cultures. Their behavior may reflect an amalgam of this “expe- riential identity” (IOM, 2002). For example, the experiential identity of immigrants includes their experience with the health systems from their country of origin as well as their immigrant experience. This experiential identity will incorporate new experiences with the American health system. Development of adequate health literacy may be hindered by limited En- glish skills or outcomes of poorly understood health experiences.

Today’s families and communities consist of people with multiple cul- tural backgrounds and experiences, who cannot be put into rigid “boxes” by using racial and ethnic labels that are often resented and are misleading. Individuals, families, and communities have belief systems, religious and cultural values, and group identity that serve as powerful filters through which information is received and processed. These concepts of cultural processes and lived identities replace more traditional concepts such as “acculturation” and present measurement challenges to researchers and health service providers.

Culture, cultural processes, and cross-cultural interventions have been discussed in-depth in several Institute of Medicine (IOM) reports (IOM, 2002, 2003a) which suggest that ways of learning, beliefs about health and illness, and patterns of communications contribute to health literacy through their effect on communication, comprehension, understanding, and deci- sion-making. Socioeconomic status was found to affect health in the IOM report Promoting Health: Intervention Strategies from Social and Behav- ioral Research (IOM, 2000). Behavioral and social factors influence a person’s susceptibility to disease, especially among individuals of lower socioeconomic status. The 2000 IOM report identified increased preva- lence of disease among socio-economically underserved groups and out-

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lined “the need to balance clinical approach to disease with recognized social and class determinants” (IOM, 2000). Social and behavioral inter- ventions were further investigated in Speaking of Health (IOM, 2002), which recognized the link between behavior and disease.

In the following section, we examine the relationships between cultural processes and health literacy for indications of how to make Americans more literate about health and illness through health systems that are more responsive to patient needs, preferences, and perspectives.

Cultural Competence

The skills and knowledge of cultural competence provide a trajectory towards the interpersonal skills for effective patient care that can be real- ized only when comprehension, understanding, and meaning are inherent in the process. Cultural competence has been variously defined by different organizations.2 Speaking of Health (IOM, 2002) notes the following di- mensions:

• Cultural awareness: A deliberate, cognitive process in which health-care providers become appreciative and sensitive to values, beliefs, lifestyles, practices, and problem-solving strategies of clients’ cultures.

• Cultural knowledge: The process of seeking and obtaining a sound educational foundation concerning worldviews of various cultures; goal is to understand clients’ world views, or the way individuals or groups of people view the universe to form values about their lives and the world around them.

• Cultural skill: The ability to collect relevant cultural data regard- ing clients’ health histories and presenting problems, as well as accurately perform culturally sensitive physical histories.

• Cultural encounter: A process that encourages health-care provid- ers to engage directly in cross-cultural interactions with clients from cultur- ally diverse backgrounds (IOM, 2002).

Among these four dimensions of cultural competency, common themes emerge: ways of thinking, understanding world views, cultural data, and cross-cultural interactions.

2For example, the HHS CLAS standards define cultural competence as “the capacity to function effectively as an individual and as an organization within the context of cultural beliefs, behaviors, and needs presented by consumers and their communities” and the Na- tional Medical Association defines cultural competence as “the application of cultural knowl- edge, behaviors, clinical and interpersonal skills that enhances a provider’s effectiveness in patient care.”

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Cultural competence becomes important to health literacy at the point where language and culture interfere with or support effective communica- tion. While health literacy efforts are not limited to cross-cultural situa- tions, and cultural competence efforts are broader than health literacy, initiatives in both these areas would benefit from coordination with each other. Cultural competency is sometimes approached through recommen- dations for culturally and socially sensitive communication. These approaches must take into consideration the dynamic and ever-changing nature of culture. As culture is constantly being influenced by lived experi- ences, so must health literacy approaches that are coordinated with cultural competence be responsive to cultural change. In meeting the health needs of diverse peoples, cultural competency is essential for the development of health literacy.

Language

An ob-gyn resident tells of working with an inner city, Hispanic population. Alone on service late one night, she struggled to communicate with a couple who spoke only Spanish in order to learn the pregnant woman’s due date. Grasping at a word familiar from popular music, she said “navidad, navidad” over and over again to the puzzled couple. Finally, she located another resident who spoke Spanish and helped her ask the couple about the “fecha” (date) the baby was expected. They all had a good laugh over her puzzling repetition of the Spanish word for “Christmas.”

An important component of cultural competence is linguistic compe- tence. Many individuals receiving care from the U.S. health-care system have limited English proficiency (LEP). For individuals whose native lan- guage is not English, issues of health literacy are compounded by issues of language and the specialized vocabulary used, both in written and spoken form, to convey health information. The 2000 census indicates that the foreign-born population in the United States is 31 million. More than 300 different languages are spoken in the United States, and 47 million citizens and non-citizens speak a language other than English at home (an increase from 31.8 million in 1990). English is not the primary language spoken in the homes of 41 percent of Hispanics, 34 percent of Koreans, 29 percent of Vietnamese, and 20 percent of Chinese (Collins et al., 2002). Eleven million individuals indicate that they speak English not well or not at all (U.S. Census Bureau, 2000). Some of these individuals live in isolation from English, that is, without personal or social resources to understand English.

The profound effect of primary language on health is widely recog-

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nized. It provided the impetus for an Executive Order on improving access to services for persons with LEP3 and a subsequent report to Congress. The effect of primary language on health remains a central concern of the federal Office of Minority Health Center for Linguistic and Cultural Com- petence in Health Care, established in 1995 to address the health needs of populations who speak limited English

Individuals with LEP have widely varying levels of literacy and health literacy in their primary language. When LEP individuals are health literate in their primary language, the key is providing language assistance either in the form of care in their primary language or interpreter services and trans- lated materials. When LEP individuals are not health literate in their own language, additional efforts are needed ensure adequate communication. Some languages do not have a written form or individuals may not be able to read, and so translation services are of no use in such cases. These individuals may be unfamiliar with medical terminology in their primary language and, therefore, linguistically competent services alone will be in- sufficient to ensure adequate communication. Alternatively, individuals may be health literate in their own culture, but not in Western medicine’s health system and style of health care.

Cultural Languages

Cultural context gets transformed into cultural language that influ- ences three critical determinants of health literacy: comprehension, under- standing, and decision-making. Different cultural groups mobilize creative forces to formulate unique cultural languages that must be considered in culturally competent approaches for implementing interventions to pro- mote health literacy. Two examples of these innovative cultural languages can be found in the language of Aboriginal people and in the dreams of Native American cultures.

In contrast to Westernized people whose language use is dominated by nouns, Aboriginal people use a language dominated by verbs in deference to their worldly vision of all existence as energy or spirit that is in constant transformation (Ross, 1996: 116). A consequence is that there is attention to the “relationship between things” and less focus on the “characteristic of things” (in a noun-driven language such as English). This feature of using “fluidity of verb-phrases” is functional in healing relationships. Thus, a re- thinking and re-framing of the standard inquiries that drive health assess-

3Executive Order No. 13166. Benefit-Cost Report of Executive Order No. 13166: Improv- ing Access to Services for Persons with Limited English Proficiency. August 2000.

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ments via predominant use of nouns, adjectives, and pronouns is necessary when working with Aboriginal people during health and illness encounters.

In Native American cultures, dreams function as a cultural language to communicate realities in everyday life and deal with health and illness. The significance of this for health care is demonstrated by Lincoln (2003) with respect to the Navajo Indians in Arizona: “Diagnosticians are called upon to cure sickness caused by dreams or to prevent sickness predicted by dreams.” (Lincoln, 2003). For Native American peoples, therefore, dreams are part of the cultural lexicon that informs health literacy.

The Hmong language has no word for cancer, or even the concept of the disease. “We’re going to put a fire in you,” is how one inexperienced interpreter tried to explain radiation treatment to the patient, who as a result, refused treatment (Morse, 2003).

Language and Meaning in the Context of Health

Frequently, words or their underlying concepts have little or no mean- ing, or a different meaning, for a person from another culture. This is true both of specific terminology as well as the essential meaning of health and illness to different people. For example, instructing a patient to take a teaspoon of medicine assumes that the patient owns a teaspoon that holds 5 cc of liquid, and identifies it as such. Promoting health literacy requires an awareness and understanding of these differences in meaning and providing what is needed to increase the probability of treatment adherence (for example, a teaspoon with which to measure the medicine, or pre-measured quantities of medicine).

As noted, recent IOM reports (IOM, 2002, 2003a) urge a broad, more realistic perspective of culture as fluid processes and lived experiences, in which communications, relationships, and meaning are central themes rel- evant to health literacy. Conceptual definitions and proposed relationships between culture and health literacy as human experiences have yet to be developed. In-depth theoretical concepts to guide scientific inquiries could arise from conceptual frameworks on the interface between cultural pro- cesses, literacy, and health literacy. These frameworks must distinguish between linguistic and cultural processes, both of which are rooted in the concept of meaning. For example, research on epilepsy found that both neurologists and patients use the word “trauma,” but neurologists most often mean “a physical blow,” while patients and families most often un- derstand the word to imply “psychological damage.” This confusion is

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exacerbated in Latino patients and families since trauma has the same two meanings in Spanish, but cultural views of illness more often focus on the psychological meaning (Long et al., 1992). While specific meaning of the word trauma may differ between individuals and groups, people will act upon the meaning they understand.

A 45-year-old Hispanic immigrant, Mr. G., undergoes a job health screen- ing and is told that his blood pressure is very high and he will not be allowed to continue work until his blood pressure is controlled. He goes to the local public hospital and is given a prescription for a Beta-blocker and a diuretic. The doctor prescribes two medications known to be effective and simple for adherence because they each are supposed to be taken once a day.

Mr. G. presents to the emergency department one week later with dizziness. His blood pressure is very low, and Mr. G. says he has been taking the medicine just like it says to take it on the bottle. The puzzling case is dis- cussed by multiple practitioners until one that speaks Spanish asks Mr. G. how many pills he took each day. “22,” Mr. G. replies. The provider ex- plains to his colleagues that “once” means “11” in Spanish.

Similarly, work on dissonances between medical staff and pregnant women of Mexican origin in Los Angeles revealed that there is no Spanish word for the English word “labor.” Medical Spanish uses a construct that translates labor as “the work of childbirth,” but women use the Spanish word for pain (“dolor”). More important than the words themselves, there may be large differences in concept for the process of labor between women and providers. The women described childbirth as “pain and the baby is born.” Clinicians, who probably think of childbirth as a longer process with physiological stages, could not understand the women’s panic when they were told that it was too soon to be admitted to the hospital (Scrimshaw and Souza, 1982). Communication goes beyond words to encompass the meaning behind the words, a meaning that is affected by culture, knowl- edge, and experience.

It is also important to consider signage in health-care settings and written materials as well as verbal communications. Recently, a clinic in Guatemala was observed to have the label “Estomocologia” (which trans- lates as “Stomachology”). This may make more sense to people there than “gastro-enterology.” There is a tremendous challenge in finding clear and acceptable signage for hospitals and clinics. One project, Hablamos Juntos, funded for ten health-care settings by the Robert Wood Johnson Founda- tion is currently working on signage, literature, and interpreter qualifica- tions and training.

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Anthropologists Good and Good (1981) write about meaning-centered clinical practice, and note that groups vary in

• the specificity of their medical complaints • their style of communication around medical complaints • the nature of their anxiety about the meaning of symptoms • their focus on organ systems • their response to therapeutic strategies

Therefore, human illness has meaning, in both the biological sense and as a human experience. As a result, clinical practice is inherently interpretive and practitioners must elicit patients’ requests, elicit and decode patients’ use of language, diagnose disease and illness, and develop plans for manag- ing problems. This includes the need to elicit explanatory modes of patients and families, analyze conflict with the biomedical model, and negotiate alternatives (Good and Good, 1981).

Patient Perspectives and Language

Patients’ varied perspectives, values, beliefs, and behaviors regarding health and illness are consistently cited as integral to quality care in several IOM reports (IOM, 2001, 2003a). Because culture is the tapestry of shared ideas, meanings, and values that underlie of human behaviors, references to “patient perspectives” in health care necessitate an understanding of cul- tural processes that can be harnessed to promote health literacy. Thinking styles influence information processing, and what a person attends to and retains in memory operates within a context that is frequently culturally determined. A classic example is the many different words for describing “snow” in Inuit languages, since qualities of snow are essential to many aspects of life in these cultures. Other cultural groups have two, one, or no words for “snow,” depending on whether snow is a central fact of daily life. Similar examples can be identified in health contexts. People with diverse cultural experiences may differ on how a fever is defined or described, how pain is expressed, and how body parts are identified, such as whether there is a word for “hand” but no words for “fingers,” or whether there is a different name for each finger. Thus, to be health literate in America means having the cognitive capacity to comprehend the Western biomedical per- spective. For a clinician, it means working with patients whose perspectives are shaped by diverse cultural contexts. Cultural processes and lived expe- riences contribute to widely different and unpredictable ways people under- stand concepts and spoken words. Culturally responsive communication is an active process by which we discover how the other person decoded or understood the stated messages. Being culturally responsive means discov-

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ering differences in frames of reference—the world views, priorities, values, and understanding each speaker brings to the encounter—on an individual basis. It requires the use of skills to seek feedback and to verify the conclu- sions or assumptions we come to as we communicate with another person. Being culturally responsive also means developing skills to ensure that our communication is being received as intended. Learning to develop commu- nication and interpersonal skills to obtain feedback and verify successful communication is critical to working competently with others, and contrib- utes to addressing the problem of health literacy.

Family relations can be a motivating factor in behavior change. The Latino value of familialismo and its influence on health-care interventions and behavioral change in individual Hispanic patients is well documented. Perez-Stable found that the social importance of cigarette smoking was greater for Latinos than for Caucasians. Latinos were also more concerned about the effects of smoking on interpersonal relationships. As a result, they felt more certain that quitting smoking would improve family relation- ships and provide a better example for their children (Perez-Stable, 1994). Sabogal and colleagues (1987) note that “to motivate a parent to alter a high-fat diet or increase the level of physical activity to prevent a future heart attack, . . . appeal[s] to his or her sense of duty to the children. The extended family network can similarly be used to persuade patient with or at risk for cardiovascular disease to adhere to prescribed or recommended medication, diet and exercise regimens.”

The contributions of culture and language to health literacy are rich and complex. Potential approaches to issues of culture, language, and health literacy are discussed in the latter section of this chapter.

Finding 4-1 Culture gives meaning to health communication. Health literacy must be understood and addressed in the context of culture and language.

Measures Can Dissociate Culture, Meaning, and Health Literacy

The interface among individuals, cultural processes, layers of cultural experience, families, communities, health systems, and health-care provid- ers is extremely complex. That complexity affects health literacy for people at every level of education and access to care. The challenge is to develop tools for measuring the health literacy effect of that complexity in order to assess and improve health literacy in the United States from both patient and provider perspectives. While strong evidence suggests an association between cultural diversity and health and illness (e.g., IOM, 2003a), the relationships between diversity and health literacy have yet to be fully delineated and investigated. This must begin with meaningful measures of

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culture, meaning, and health literacy. These new measures should function to improve the validity of current approaches and provide new knowledge about the impact of health literacy on health outcomes in diverse popula- tions.

MASS CULTURE

Mass culture refers to the institutions, organizations, and individuals that produce and disseminate health messages to Americans. The quantity, quality, and lack of quality control over these messages have exploded in the past 10 years. Hundreds of health organizations across the country from hospitals to advocacy groups to major government agencies like HHS, the Centers for Disease Control and Prevention (CDC), the National Li- brary of Medicine, and the National Institutes of Health (NIH), have cre- ated elaborate “user-friendly” information sources. These are often elec- tronically accessible 24 hours a day to provide Americans with up-to-date health information on the care and prevention of disease. But the informa- tion sources available to Americans do not stop there. Major advocacy groups such as AARP and The American Cancer Society, plus many others, also offer detailed information on health care and disease prevention. These approaches to providing and accessing information are in their infancy, and must be evaluated and then modified for maximum effectiveness. When consumer needs are at the core of information provision, whether via print, digital media, or intrapersonal communication, the information can be more accessible. With appropriate attention to the information needs of health-care consumers, new technologies can offer all segments of society greater access to health information.

In the private sector, the marketing of pharmaceutical drugs—both over-the-counter and prescription—is now a part of every American’s television viewing. The cost of pharmaceuticals promotions rose to $19.1 billion in 2001 (Medvantx, 2003). The industry drug packaging and con- sumer education programs are another powerful source of health informa- tion. Radio programs provide regular advice on both modern and herbal medicines. Products of all kinds make health claims as part of their mar- keting programs. Indeed, health has become a major consumer motivator along with sex and price promotions in American marketing.

The news media has also taken health information seriously. Dozens of major news outlets have health reporters who are increasingly skilled in interpreting health studies. The Journal of the American Medical Associa- tion is widely quoted and referenced in news articles in both print and broadcast media. Finally, the Internet has provided an opportunity for any individual to make health claims about any product or procedure with little or no scientific basis. In sum, the American public is now faced with a

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plethora of health information and the arduous task of finding, selecting, reading, understanding, judging, and following the advice presented by multiple sources.

How People Obtain and Use Health Information

How do people obtain and use health information? There is no single reliable answer to this question. While data on health information alone is not available, responses of the National Adult Literacy Survey (NALS) participants indicated over half of individuals at each literacy skill level as measured by the NALS obtain information about current events, public affairs, and government from family and friends, newspapers and maga- zines, and radio and television (Kirsch et al., 1993). Between 62 and 69 percent of adults at all NALS literacy skill levels reported obtaining infor- mation from family and friends. Between 94 and 97 percent of adults at all NALS skill levels reported using radio or television to obtain information. Individuals in the lower literacy levels were less likely to use print media as an information source than were adults in the higher levels. While 69.5 percent of the respondents with NALS Level 1 literacy skills reported get- ting information from newspapers or magazines, 85.5 percent of adults with literacy skills at NALS Level 2 skills and 90 percent of those with literacy skills at or above NALS Level 3 reported obtaining information from newspapers or magazines.

© Reprinted with special permission of King Features Syndicate.

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BOX 4-1 Sources of Health Information Reported in a Gallup Poll

Proportion who reported getting a Proportion who reported a great deal great deal or moderate amount of or moderate amount of trust and healthand medical information from confidence inthe following sources of the following sources: health and medical information:

Doctor 70% Doctors 93% TV 64% Nurses 83% Books 56% Books 82% Newspapers 52% Newspapers 64% Magazines 51% Magazines 62% Nurse 49% Internet 62% Internet 37% TV 59%

SOURCE: Gallup Organization (2002).

The National Cancer Institute is presently conducting the Health Infor- mation National Trends Survey (HINTS), one of the nation’s first national surveys of health information sources.4 HINTS is designed to provide data regarding pattern of information use and opportunities to inform Ameri- cans about cancer; however, survey data is not yet available. In a Gallup Organization poll of 1,004 adults nationwide, several sources of informa- tion were cited as “a great deal” or “moderate” sources of health informa- tion (Gallup Organization, 2002). These sources are shown in Box 4-1. Confidence levels remain highest about information obtained from doctors and nurses, but confidence levels (great deal or moderate confidence) from other sources are also fairly high.

A September 2001 survey called Sex Matters looked at women’s knowl- edge of sex differences in health (Benenson Strategy Group, 2001). Findings from this survey, based on telephone interviews of 962 women, indicate that 44 percent of adult women who said they have a doctor they see regularly for basic health care indicated that their doctor is the major source of information. However, when provided with specific information, only 19 percent said they had heard it from a doctor or nurse, as shown in Box 4-2.

4For more information, please see http://dccps.nci.nih.gov/hcirb/hints.html.

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To understand the full impact of health literacy on America’s health system, we need to understand a wide array of information sources, infor- mation needs, information contexts, and communication complexity.

Complexity of Materials

Many materials developed to provide health information fail to take into account the needs of the audiences for these materials. Rudd and colleagues (2000) reviewed studies of patient information materials, and found that disparities between the readability of education materials and patient reading level occurred in ambulatory care settings (Cooley et al., 1995; Davis et al., 1990), substance abuse treatment centers (Davis et al., 1993), and pediatric care settings (Davis et al., 1994). Similar findings are reported for patients with diabetes (Hosey et al., 1990), arthritis (Hill, 1997), and lupus (Hearth-Holmes et al., 1997). These studies found that the reading levels of groups of patients with these chronic diseases fell between grade levels 6 and 10, while the readability of the materials de- signed for them fell between grade levels 7 and 13.

BOX 4-2 Selected Findings from Sex Matters

Which of the following Have you ever heard this To the best of your would you say you use information before: recollection, where did most often as a source In addition to the typical you hear this informa- of information about chest pain associated with tion? (asked only of health for you: a heart attack, women may the 55% who said they

suffer from subtle symptoms had heard it) such as indigestion, abdominal or mid-back pain, nausea or vomiting?

Doctor 44% Yes 55% Newspaper/TV 25% Magazines 15% No 44% Magazines 22% Newspapers/TV 14% Don’t know 1% Doctor 17% Friends/family 14% Friends/family 15% Internet 7% Don’t know 10% Nurses 4% Medical text 7% Don’t know 2% Nurses 2%

Internet 1%

SOURCE: Benenson Strategy Group (2001).

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Rudd and colleagues (2000) also showed that several studies examined patient education materials designed for specific ethnic groups. A substan- tial number of studies report on both readability and comprehension assess- ments of these documents, deeming most of them inappropriate (Austin et al., 1995; Delp and Jones, 1996; Jolly et al., 1993, 1995; Logan et al., 1996; Powers, 1988; Spandorfer et al., 1995; Williams et al., 1996). Hosey and colleagues (1990) used the Wide Range Achievement Test to measure the reading ability of a group of American Indian diabetic patients and found that although many patients scored at a reading grade level of 5, the diabe- tes education materials scored at a mean reading grade level of 10. Guidry, Fagan, and Walker (1998) note that less than half of the cancer education materials specifically targeting African Americans reflected the culture of African Americans and that few were written at a reading grade level for those with low literacy skills.

Finding 4-2 More than 300 studies indicate that health-related mate- rials far exceed the average reading ability of U.S. adults.

Popular Sources of Health Information

News Media. The news media is a large part of America’s health informa- tion revolution. More than a dozen exclusively health-related magazines are easily available at grocery stores and major bookstore chains every month in America. Magazines aimed at women, men, children, parents, and mothers are also widely available and carry numerous articles on a wide variety of health issues. Several of America’s largest newspapers, reach- ing millions of people each day, carry health sections dedicated to health news. These health sections are read by people at all literacy levels. Three quarters of newspaper readers with NALS Level 1 literacy skills reported reading the home, fashion, health, or reviews sections, while 85 percent of newspaper readers with NALS Level 5 skills read these sections (health data alone was not available) (Kirsch et al., 1993). The major broadcast and cable networks have health journalists and health reporting. There are multiple cable channels dedicated to health topics and other channels dedi- cated to women’s issues such as Oxygen, that cover health as a major focus. Some of broadcast TV’s most popular shows—Oprah and more recently a spin-off called Dr. Phil, regularly carry health information and advice. Health news, such as SARS, heart disease, obesity, antibiotic resistance, and smallpox vaccination has been a centerpiece in newspaper headlines dozens of times in 2002–2003 alone.

Advertising and Marketing. Advertising is also a prominent source of health information. Scott-Levin, a drug market research firm in Newtown, Penn- sylvania, reports that while all visits to physician’s offices rose 2 percent in

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the first nine months of 1998, visits for specific causes related to advertised products and services increased much more dramatically during this time. For example, visits for smoking cessation rose 263 percent, visits for impo- tence increased 113 percent, visits for hair loss rose 30 percent, and visits for high cholesterol rose by 19 percent (Maguire, 1999).

Commercial and social marketing of health information, products, and services is now a multi-billion-dollar industry. According to the Institute for Policy Innovation, direct-to-consumer advertising of prescription drugs alone increased to $1.8 billion in 1999 (Matthews, 2001). These expendi- tures are not unique. They represent a small portion of the dollars aimed at providing health information to consumers and motivating specific health behaviors. The United States invested some $1,080,000,000 in its recent 6- year National Youth Anti-Drug Media Campaign (Eddy, 2003). The im- portance of these expenditures goes beyond the dollar amount. These ex- penditures are guided by an understanding of consumers and their desires. These are not “information” campaigns, but rather targeted marketing efforts designed to influence what people do by offering new products, new services, lower barriers, and new motivations for changing their behavior— to stop smoking, to avoid fast food, to get a mammogram or to delay getting a mammogram. These expenditures are guided by years of market research studies and experience that have shown what kind of language works, what pictures appeal, and what messages compel people to act (Wilke, 1994). Despite this investment of talent and resources, some pro- grams fail. The most recent evaluation of the Office of National Drug Control Policy’s National Youth Anti-Drug Media Campaign program states: “There is little evidence of direct favorable Campaign effects on youth. There is no statistically significant decline in marijuana use to date, and some evidence for an increase in use from 2000 to 2001” (Hornick et al., 2002).

One characteristic of the commercial and social marketing sector is that the information is not provided objectively. The authors of these messages, whether antismoking advocates or the cigarette industry, carefully select facts, stories, and images that fall far short of full information for an intelligent decision (Mazur, 2003: 6–11). This assault on the public may have trained segments of the American public to be skeptical; to expect short sound bites of information and to avoid equivocation in information. As Mazur concludes:

Although we may talk about shared decision making in medical care and the provider–patient relationship, the original goal of the decision scien- tist, to provide a full discussion of risks and benefits among a full set of alternatives, may or may not be attainable. And it is far from clear wheth- er patients actually want to participate in such a fully shared decision- making environment (Mazur, 2003: 177).

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Family and Friends. The lay network, informal communications among family members and friends, is another source of information about health for many individuals. Health information is often shared through personal experiences recounted by others. Personal stories also come from ethnic media programming and print media coverage. These personal stories may have the power to influence health behavior. This may be particularly true for individuals with limited literacy skills. Friedell and colleagues (1997) found that many individuals with limited literacy more often obtained information about cancer from family and others who have had experi- ences with a late-stage diagnosis rather than from reading about the disease.

The Internet. The Internet is estimated to reach 70 million Americans with health information. As America’s attention moves from the treatment of disease to wellness, the number of health sites has mushroomed. Informa- tion about Internet use among adolescents and young adults indicates that most have used the Internet to access health information. A recent survey of 15- to 24-year-olds found that 90 percent of this population has been online (Rideout, 2001). Of this 90 percent, 75 percent used the Internet at least once to find health information. Searches of the Internet for health information exceed searches for sport scores or online purchases and par- ticipation in chat rooms (Rideout, 2001).

Questions have been raised regarding whether the Internet is a reliable and understandable information source that appeals to and is accessible by diverse users (e.g., Goldstein and Flory, 1997; IOM, 2002; Sikorski and Peters, 1997). Socioeconomic status and level of education are strongly associated with the likelihood that a consumer will obtain health informa- tion from the Internet. Limited literacy in English and disparities in com- puter access decrease the likelihood that the information will be available to and understood by all health consumers (Houston and Allison, 2002). In addition, the majority of health-related sites on the Internet are English- language-only sites (Kalichman et al., 2001) which also serves to limit access. The Children’s Partership conducted an analysis of online content for low-income and underserved Americans and estimate that 44 million adults face literacy barriers in their use of the Internet (Lazarus and Mora, 2000). Of the 1,000 web sites assessed, only 10 were accessible for adults with limited literacy skills. Furthermore, only 20 had content in languages other than in English that provided “practical information for a more productive life in the United States.”

Because there is little regulation or oversight of the information posted on the Internet, many consumers and health-care professionals are con- cerned about the reliability of posted information (Houston and Allison, 2002; Murray et al., 2003). In fact, Healthy People 2010 includes as an

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126 HEALTH LITERACY

objective increasing the proportion of web sites with health-related infor- mation that allow the user to evaluate the quality of that information (HHS, 2000). A meta-analysis of empirical studies of consumer health information on the Internet by Eysenbach et al. (2002) found that 70 percent of the studies analyzed concluded that quality was a problem.

The Internet also can influence the ways health professionals and pa- tients interact. Consumers who use the Internet to look up health-related information may take action based on that information, including bringing the information to their health-care provider. In a telephone survey of 521 people who had used the Internet to search for health information, those in poor or failing health were more likely than those in good or excellent health to talk to their physician about health information they had found online (Houston and Allison, 2002). Murray et al. (2003) reported findings from a telephone survey of a nationally representative sample of 3,209 people. They found that 50 percent of people who had found information relevant to their own health took that information to their physician. Among those who took information to the physician, 83 percent said they felt more in control as a result, 78 percent said they felt more confident as a result, and 6 percent reported negative feelings such as embarrassment as a result. Murray and colleagues further reported that those taking information from the Internet to their physician may experience a change in patient/physician relationship depending primarily on the communication skills of the physi- cian. For example, if the patient perceived that the physician “acted chal- lenged” by the information the relationship was more likely to be damaged.

Finding 4-3 Competing sources of health information (including the national media, the Internet, product marketing, health education, and consumer protection) intensify the need for improved health literacy.

Finding 4-4 Health literacy efforts have not yet fully benefited from research findings in social and commercial marketing.

OPPORTUNITIES TO IMPROVE HEALTH LITERACY

Evidence-Based Approaches5

Within the health sciences there is emerging literature on the effective- ness of community-based interventions with culturally diverse groups and increasing cultural competency by health providers (IOM, 2002). The out-

5The committee would like to thank the Agency for Healthcare Research and Quality for their assistance with this segment of the report.

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CULTURE AND SOCIETY 127

comes of a number of community-based approaches have been published, and a sample of these are shown in Table 4-1. These approaches, while small in number, are an important contribution to current and future ap- proaches to health literacy, particularly to the degree that they provide evidence of their effectiveness. As noted earlier in this chapter, this collec- tion of approaches is not intended to be an exhaustive review of the work in the field. Studies described in this table represent a sample of the English- language peer-reviewed health literature that investigate the effect of an intervention in a community-based setting. Many studies in this table re- flect the contribution of the Agency for Healthcare Research and Quality (AHRQ) research program, which is discussed in more detail in Chapter 6. Additional studies were identified by searching the Medline, PsycInfo, ERIC,6 Sociological Abstracts, and CINAHL7 databases, and through testi- mony to the committee by experts in the field.

Four studies evaluated patient knowledge (Bill-Harvey et al., 1989; Busselman and Holcomb, 1994; Fitzgibbon et al., 1996; Raymond et al., 2002), and of these, only one (Bill-Harvey et al., 1989) showed positive changes in both understanding and health behavior. Three other programs (Fouad et al., 1997; Hartman et al., 1997; Lillington et al., 1995) showed an improved health outcome as a result of the program, but failed to provide evidence of increased understanding. Other evidence-based studies are continually being identified and evaluated by the CDC’s Task Force on Guidelines for Community Preventative Services.

Promising Approaches

In addition to these published studies, many unpublished activities are being carried out in the community to improve health literacy. Anecdotal evidence suggests that the limited budgets of these programs, combined with their emphasis on intervention, result in funding being used for the approach itself to the exclusion of formal evaluation of the program out- come. Examples of these approaches are presented below.

Community Opportunities

Community organizations provide an opportunity to address issues of health literacy directly. An example of this is a set of programs to address the needs of the Navajo community. Older Navajos are particularly vulner- able to complications of medical conditions exacerbated by a mismatch in

6Education Resources Information Center. 7Cumulative Index to Nursing and Allied Health Literature.

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128 HEALTH LITERACY

TABLE 4-1 Examples of Published Studies of Community-Based Interventions

Citation Setting Study Design Population

Bill-Harvey Senior centers and Uncontrolled n = 76 (100 enrolled, et al., 1989 community centers trial 76 completed program)

for the elderly, Hartford, CT

Busselman WIC voucher Randomized n = 32 and Holcomb, distribution sites in trial Controls = 31 1994 7 urban and rural Participants were receiving WIC

communities, vouchers Kansas Controls met all WIC criteria

except for income Controls had significantly higher

reading levels as measured by the WRAT-R than the WIC group (p < 0.001)

Elkind Three county region Pre-test, n = 301 et al., 2002 of Eastern post-test 185 farmworkers

Washington 115 community members Hispanic farmworkers and their

families living in eastern Washington

Fitzgibbon Literacy training Randomized n = 38 families (mother and at et al., 1996 program in a controlled least one child between 7–12

Hispanic trial years). neighborhood, Low-income Hispanics Chicago, IL

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CULTURE AND SOCIETY 129

Continued

Intervention Outcome

10-Hour osteoarthritis education program Pre-/post-test outcomes showed designed for older low-income adults significant increase in knowledge on with osteoarthritis. Course taught by both verbal and picture story tests indigenous community leaders. (p < 0.001 for both), significant

increase in scores on exercise scale (p < 0.001), improvement in attitude toward one’s illness, and increase in use of adaptive equipment. No significant improvement in functioning.

Simplified dietary guidelines. Differences in comprehension of the Control group received the unmodified seventh and tenth grade materials were

tenth grade reading level version of the not significant. introduction to dietary guildines, while the WIC group received a simplified seventh grade reading level version.

Four one-act Spanish language plays Participants showed significantly greater intended to provide education about knowledge about information from the health and safety issues for plays (p < 0.01). farmworkers. Participants reported enjoying the plays,

remembering the story lines, and were willing to see additional plays if available.

Intervention families participated in a No significant differences between 12-week-long culture-specific dietary intervention and control groups, before intervention intended to reduce cancer and after intervention in mothers’ fat risk through the adoption of a low-fat, intake, saturated fat intake, fiber high-fiber diet. intake, exercise level, or nutrition

Control families received standard knowledge; or in children’s dietary pamphlet on nutrition and health intake or nutrition knowledge. behaviors and no classes.

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130 HEALTH LITERACY

TABLE 4-1 Continued

Citation Setting Study Design Population

Fouad City of Birmingham, Volunteer n = 81 completed program (130 et al., 1997 AL participants enrolled, program offered to

matched 600) with non- 81 controls participant City employees with high blood controls pressure (BP)

Hartman Expanded Food and Randomized n = 134 participants et al., 1997 Nutrition controlled 70 controls

Education Program trial, (EFNEP), Twin randomized Cities Metropolitan by Area, MN instructor

(not participant)

Kumanyika Community based Randomized n = 330 et al., 1999 Recruitment from trial Adults with a history of

supermarkets in hypertension or an abnormal Washington, D.C. total cholesterol level, aged in primarily 40–70. African-American neighborhoods

Lillington 4 WIC sites in south Randomized n = 768, 555 at follow-up et al., 1995 and central Los controlled Pregnant WIC participants who

Angeles trial were current smokers or recent ex-smokers

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CULTURE AND SOCIETY 131

Continued

Intervention Outcome

Educational program designed to reduce Participants showed significant decrease risk factors for cardiovascular disease in mean BP (p = 0.03) among low-literacy, unskilled workers. No significant change in BP of controls.

Participants attended health education sessions over the course of 1 year on different topics; weight and BP assessed at each session, goals set, culturally appropriate examples used, monetary incentives offered.

Participants and controls received materials such as newletters and tipsheets.

Nutrition education program. Mixed model regression analyses showed Participants received low-fat nutrition significant effects for the intervention

education curriculum. program related to changes in eating Controls received regular EFNEP pattern scales and scales related to

materials that focus on food budgeting, attitudes of low-fat eating. safety, and healthy eating.

Nutrition counseling. Decreases in total cholesterol and systolic Self-help (control) group received food blood pressure observed at 12 months,

cards and nutrition guide. but there was no significant difference Full instruction (intervention) group between the control and intervention

received these materials, video and groups. audiotape series, and a series of 4 Outcomes did not differ by literacy monthly classes. scores.

Culturally appropriate low-literacy Twice as many smokers in intervention smoking cessation intervention materials group reported quitting smoking at 9 for low-income African-American and months gestation compared to control Hispanic women. group (p < 0.01). Differences remained

Intervention group received 15-minute, at 6 weeks postpartum. Although no one-on-one interviews, self-help guide, significant differences were observed reinforcement cards, and participated in for relapse during pregnancy among incentive contest. ex-smokers at 6 weeks postpartum, a

Controls received usual care; included significantly higher proportion of written material on quitting smoking in intervention ex-smokers were still pregnancy abstinent (79%), compared to control

ex-smokers (62%) (p < 0.01).

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132 HEALTH LITERACY

TABLE 4-1 Continued

Citation Setting Study Design Population

Raymond Malls and family Before-after n = 656 et al., 2002 planning clinics in comparison Females, aged 12–50, without a

eight U.S. cities: health-care or marketing Denver, Los background, and able to read Angeles, Chicago, English well enough to read an San Antonio, over-the-counter label Philadelphia, Phoenix, Miami, Washington, D.C.

the health literacy skills of health consumers and care providers. The Gath- ering Place8 provides health and literacy programs for Navajo adults and children in their homes and community centers. Bilingual, trained commu- nity members provide services that include information on health, safety, mental, and physical wellness, and preventive measures. A “Shima Yazhi” lay health program offers information and support for new baby care, parenting, and health concerns, in locations convenient to the client.

The Gathering Place also represents a collaborative program, as it offers workshops to child care providers throughout Eastern Agency of the reservation using videos, bilingual oral presentations, and hands-on formats.

We need to provide opportunities for health professionals to experience the native culture by providing workshops, presentations, or hands-on experi- ence in selected ceremonies. We also need to provide exposure to commu- nity members with more formal workshops in health literacy related issues. Some topics may be “what steps need to be taken when visiting with doc- tors,” and “talking about prescriptions and how they are supposed to work.”

Alvin Bille The Gathering Place

8The Gathering Place is located in Thoreau, New Mexico. For more information, see http: //www.navajo-coop.com.

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CULTURE AND SOCIETY 133

Asian Health Services9 takes advantage of community opportunities to provide health education through one-on-one and community outreach at nail salons, bars, sewing factories, massage parlors, beauty schools, and community events (Asian Health Services, 2003). The program provides group education to women thorough Northern California community cen- ters, area businesses, and clinics. These programs offer information on women’s health needs such as breast cancer and pap smears, as well as information about health insurance for women and their children. The “Health is Strength” Project run by Asian Health Services provides Korean adults and children with health education materials (brochure, resource list, workshops) in the Korean language. Distributed in churches and other community venues, these materials are designed to improve knowledge and remove barriers to health literacy. Additionally, bilingual (English and Ko- rean) health counselors work within community social structures, primarily churches attended by Koreans, to organize activities, serve as liasons be- tween the Korean and medical communities, provide social support, follow up, and improve health knowledge.

Community centers, homes, and businesses provide the opportunity for the Centro Latino de Salud, Educación y Cultura to serve Missouri-area Hispanic adults and children through a program called Attaining Cultural Competency and Enriching Health Service Solutions. This program pro- vides information and help in accessing needed educational and health resources, a program for new and expectant mothers, interpreter and trans- lation services, and health referrals (Centro Latino, 2003).

Intervention Outcome

Prototype product packaging and insert 85% of participants showed for emergency contraceptive pill. understanding of at least 7 of 11

Participants were shown the package and communication objectives. then answered questions about the Participants with lower literacy product. significantly less likely than those with

Results reported by literacy level as higher literacy to understand almost all measured by the REALM. of the communication objectives, but 8

of the 11 objectives were understood by more than 80% of those with lower literacy.

9Asian Health Services is based in Oakland, California. For more information, see http:// www.ahschc.org.

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134 HEALTH LITERACY

Nongovernmental Organizations

Nongovernmental organizations provide an opportunity for informed and effective advocates to have a role in shaping health literacy programs, policies, and interventions. For example, The Institute for Healthcare Ad- vancement has developed a set of books to assist consumers in deciding what health issues can be dealt with at home (and how to best deal with them) and what health issues should initiate a call to a health-care provider. Most of these books, part of a series entitled What to Do for Health, are available in English or Spanish; two are also available in Vietnamese. An evaluation of one of the books carried out by Molina Healthcare found that individuals and families who received the books visited the emergency de- partment 6.7 percent less after receiving the books (Institute for Healthcare Advancement, 2003).

Another example is provided by the Managed Care Consumer Assis- tance Program (MCCAP). The MCCAP works to educate consumers about the concepts of managed care and rights as consumers, and provide assis- tance with dispute resolution procedures. MCCAP holds consumer educa- tion workshops in the appropriate languages and provides one-on-one coun- seling to consumers needing information or assistance with managed care. Services are provided to low-income, multilingual, and multicultural com- munities, through a network of 25 community-based organizations. These community-based organizations include neighborhood centers, ethnic orga- nizations, and social service agencies (MCCAP, 2003).

Collaborative Programs

Collaborations between government and community programs offer an opportunity to develop interventions appropriate to the needs of the audi- ence. An example of a collaborative approach is a set of materials on sex education developed though a collaboration between the Program for Ap- propriate Technology in Health, Austin/Travis County Health Department, the Washington, DC, Center for Youth Services, Delaware (Maryland) Delmarva Rural Ministries, the Tlingit and Haida Indian Tribes Central Council, and the Children’s Theatre of Juneau. Entitled “Plain Talk,” these materials were developed to educate and inform English-speaking and non- English-speaking low-literate youth in response to a nationwide needs as- sessment survey of 2,500 U.S. organizations that showed that teens espe- cially need materials on AIDS, other STDs, and condom use (Program for Appropriate Technology in Health, 2003).

Programs between for-profit or nonprofit agencies and community or- ganizations provide an opportunity to develop appropriate interventions, and to reach the intended audience. This type of collaboration can effec-

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CULTURE AND SOCIETY 135

tively create coalitions of existing providers by partnering a for-profit or nonprofit organization with specific ethnic and geographically focused com- munity providers. As an example, the Alzheimer’s Association of Los Ange- les has developed a model to build the dementia care capability of existing community providers such as hospitals, public health clinics, adult day care centers, and community-based social service agencies. Using focus groups and community input, the Alzheimer’s Association identified churches as a visible and trusted source of health information for the Los Angeles area

BOX 4-3 Excerpt from the Introduction to “Language Access: Helping Non-English Speakers Navigate Health and Human Services”

Public and private organizations have begun to address language barriers to en- sure effective communication between service providers and patients, particularly in health care. The language gap can lead to delays in or denial of service, unnec- essary tests, more costly or invasive treatment of disease, mistakes in prescribing and using medication, and deterrence in patient compliance with treatment. Lan- guage barriers are a contributing factor in health care disparities among racial and ethnic minorities and in a lack of health insurance among immigrants and minori- ties. In a series of federal guidances since 2000, federal agencies have reminded recipients of federal funds of their obligation under civil rights law to provide mean- ingful access to their services for limited-English proficient individuals. The Office for Civil Rights in the U.S. Department of Health and Human Services (HHS) states that language assistance should result in accurate and effective communication between provider and client, at no cost to the client. Within the health and human services field, affected organizations include state and local health and welfare agencies, hospitals and clinics, managed care organizations, nursing homes, men- tal health centers, senior citizen centers, Head Start programs and contractors. In three federal programs, federal agencies have approved reimbursement for lan- guage services to applicants and recipients who are limited English proficient. HHS, in a November 1999 brief, approved the use of federal Temporary Assis- tance for Needy Families (TANF) and state Maintenance-of-Effort (MOE) funds to provide language services. In a 2000 letter to state Medicaid directors, the Centers for Medicaid & Medicare Services confirmed that federal matching funds for the State Children’s Health Insurance Program (SCHIP) and Medicaid are available for state expenditures on interpretation and translation. At least nine states—Ha- waii, Idaho, Maine, Massachusetts, Minnesota, Montana, New Hampshire, Utah and Washington—have obtained federal matching funds for these services. Re- cently, other states have enacted legislation requiring interpreters in emergency departments and hospitals (Massachusetts and Rhode Island, respectively); a health-care interpreters council (Oregon); and an office to address racial and eth- nic disparities in health care, including language and cultural competency (New Jersey).

SOURCE: Morse (2003).

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136 HEALTH LITERACY

African-American community. The organization then developed a set of education and outreach projects which involved collaboration with clergy, social service health-care providers, and constituent representatives (Alz- heimer’s Association of Los Angeles, 2001).

Approaches to Increasing Language Access

In 2003, the National Conference of State Legislatures’ Children’s Policy Initiative issued a report titled “Language Access: Helping Non- English Speakers Navigate Health and Human Services” (Morse, 2003). This report highlights the importance of language to quality of care and access to care, and reviews the array of promising approaches to improving language access that are currently being carried out on the federal and state levels. An excerpt from this report is presented in Box 4-3.

These studies and programs, both published and unpublished, offer a variety of possible approaches and indicate both the need for effective programs and for outcomes measures of program effectiveness. While little evidence supports the use of any given approach, research into the value of existing and innovative approaches on health behaviors and the effect of participatory action and empowerment strategies can provide further direc- tion for future approaches to address health literacy.

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CULTURE AND SOCIETY 137

REFERENCES

Alzheimer’s Association of Los Angeles. 2001. Faith-Centered Partnerships: A Model for Reaching the African-American Community. [Online]. Available: http://www.alzla.org/ resources/faithcentered/index.html [accessed: December, 2003].

AMA Ad Hoc Committee on Health Literacy. 1999. Health literacy: Report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Journal of the American Medical Association. 281(6): 552–557.

Asian Health Services. 2003. Asian Health Services Home Page. [Online]. Available: http:// www.ahschc.org/ [accessed: October 20, 2003].

Finding 4-1 Culture gives meaning to health communication. Health literacy must be understood and addressed in the context of culture and language.

Finding 4-2 More than 300 studies indicate that health-related materials far ex- ceed the average reading ability of U.S. adults.

Finding 4-3 Competing sources of health information (including the national media, the Internet, product marketing, health education, and consumer protec- tion) intensify the need for improved health literacy.

Finding 4-4 Health literacy efforts have not yet fully benefited from research findings in social and commercial marketing.

Recommendation 4-1 Federal agencies responsible for addressing disparities should support the development of conceptual frameworks on the intersection of culture and health literacy to direct in-depth theoretical explorations and formulate the conceptual underpinnings that can guide interventions.

4-1.a NIH should convene a consensus conference, including stakeholders, to develop methodology for the incorporation of health literacy improvement into approaches to health disparities. 4-1.b The Office of Minority Health and AHRQ should develop measures of the relationships between culture, language, cultural competency, and health literacy to be used in studies of the relationship between health literacy and health outcomes.

Recommendation 4-2 AHRQ, the CDC, Indian Health Service, Health Resourc- es and Services Administration, and Substance Abuse and Mental Health Servic- es Administration should develop and test approaches to improve health commu- nication that foster healing relationships across culturally diverse populations. This includes investigations that explore the effect of existing and innovative communi- cation approaches on health behaviors, and studies that examine the impact of participatory action and empowerment research strategies for effective penetra- tion of health information at the community level.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

138 HEALTH LITERACY

Austin PE, Matlack R 2nd, Dunn KA, Kesler C, Brown CK. 1995. Discharge instructions: Do illustrations help our patients understand them? Annals of Emergency Medicine. 25(3): 317–320.

Benenson Strategy Group. 2001. Sex Matters Survey. Available from: Roper Center for Public Opinion Research In: Public Opinion Online. Storrs, CT: The Roper Center for Public Opinion Research.

Bill-Harvey D, Rippey R, Abeles M, Donald MJ, Downing D, Ingenito F, Pfeiffer CA. 1989. Outcome of an osteoarthritis education program for low-literacy patients taught by indigenous instructors. Patient Education and Counseling. 13(2): 133–142.

Billie A. 2003. Health and Literacy: A Native American Point of View. Presentation given at a workshop of the Institute of Medicine Committee on Health Literacy. February 13, 2003, Irvine, CA.

Busselman KM, Holcomb CA. 1994. Reading skill and comprehension of the dietary guide- lines by WIC participants. Journal of the American Dietetic Association. 94(6): 622– 625.

Centro Latino. 2003. Centro Latino de Salud, Educación, y Cultura Home Page. [Online]. Available: http://centrolatino.missouri.org [accessed: October 20, 2003].

Collins KS, Hughes DL, Doty MM, Ives BL, Edwards JN, Tenney K. 2002. Diverse Commu- nities, Common Concerns: Assessing Health Care Quality for Minority Americans. New York: The Commonwealth Fund.

Cooley ME, Moriarty H, Berger MS, Selm-Orr D, Coyle B, Short T. 1995. Patient literacy and the readability of written cancer educational materials. Oncology Nursing Forum. 22(9): 1345–1351.

Cooper LA, Roter DL. 2003. Patient-provider communication: The effect of race and ethnicity on process and outcomes in health care. In: Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, Editors. Washing- ton, DC: The National Academies Press. Pp. 336–354.

Cooper-Patrick L, Gallo JJ, Gonzales JJ, Vu HT, Powe NR, Nelson C, Ford DE. 1999. Race, gender, and partnership in the patient-physician relationship. Journal of the American Medical Association. 282(6): 583–589.

Davis TC, Crouch MA, Wills G, Miller S, Abdehou DM. 1990. The gap between patient reading comprehension and the readability of patient education materials. Journal of Family Practice. 31(5): 533–538.

Davis TC, Jackson RH, George RB, Long SW, Talley D, Murphy PW, Mayeaux EJ, Truong T. 1993. Reading ability in patients in substance misuse treatment centers. International Journal of the Addictions. 28(6): 571–582.

Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. 1994. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 93(3): 460–468.

Delp C, Jones J. 1996. Communicating information to patients: The use of cartoon illustra- tions to improve comprehension of instructions. Academic Emergency Medicine. 3(3): 264–270.

Duranti A. 1997. Linguistic Anthropology. Cambridge: Cambridge University Press. Eddy M. 2003. War on Drugs: The National Youth Anti-Drug Media Campaign. Congres-

sional Research Service, The Library of Congress. Elkind PD, Pitts K, Ybarra SL. 2002. Theater as a mechanism for increasing farm health and

safety knowledge. American Journal of Industrial Medicine. (Supplement 2): 28–35. Eysenbach G, Powell J, Kuss O, Sa ER. 2002. Empirical studies assessing the quality of health

information for consumers on the world-wide web: A systematic review. Journal of the American Medical Association. 287(20): 2691–2700.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

CULTURE AND SOCIETY 139

Fitzgibbon ML, Stolley MR, Avellone ME, Sugerman S, Chavez N. 1996. Involving parents in cancer risk reduction: A program for Hispanic American families. Health Psychology. 15(6): 413–422.

Fouad MN, Kiefe CI, Bartolucci AA, Burst NM, Ulene V, Harvey MR. 1997. A hypertension control program tailored to unskilled and minority workers. Ethnicity and Disease. 7(3): 191–199.

Friedell GH, Linville LH, Rubio A, Wagner WD, Tucker TC. 1997. What providers should know about community cancer control. Cancer Practice. 5(6): 367–374.

Gallup Organization. 2002. Gallup Poll. Roper Center for Public Opinion Research. In: Public Opinion Online. Storrs, CT: The Roper Center for Public Opinion Research.

Goldstein D, Flory J. 1997. Health care commerce on the net: The revolution begins. Medical Interface. 10(8): 56–58.

Good BJ, Good MJD. 1981. The meaning of symptoms: A cultural hermeneutic model for clinical practice. In: The Relevance of Social Science for Medicine. Eisenberg L, Kleinman A, Editors. Dordecht, Holland: Reidel. Pp. 165–196.

Guidry JJ, Fagan P, Walker V. 1998. Cultural sensitivity and readability of breast and pros- tate printed cancer education materials targeting African Americans. Journal of the Na- tional Medical Association. 90(3): 165–169.

Hartman TJ, McCarthy PR, Park RJ, Schuster E, Kushi LH. 1997. Results of a community- based low-literacy nutrition education program. Journal of Community Health. 22(5): 325–341.

Hearth-Holmes M, Murphy PW, Davis TC, Nandy I, Elder CG, Broadwell LH, Wolf RE. 1997. Literacy in patients with a chronic disease: Systemic lupus erythematosus and the reading level of patient education materials. Journal of Rheumatology. 24(12): 2335– 2339.

HHS (U.S. Department of Health and Human Services). 2000. Healthy People 2010: Under- standing and Improving Health. Washington, DC: U.S. Department of Health and Hu- man Services. [Online]. Available: http://www.health.gov/healthypeople [accessed: Janu- ary 15, 2003].

HHS. 2001. National Standards for Culturally and Linguistically Appropriate Services in Health Care. Executive Summary. Washington, DC: U.S. DHHS Office of Minority Health.

Hill J. 1997. A practical guide to patient education and information giving. Baillieres Clinical Rheumatology. 11(1): 109–127.

Hornick R, Maklan D, Cadell D, Barmada CH, Jacobsen L, Prado A, Romantan A, Orwin R, Sridharan S, Zanutto E, Baskin R, Chu A, Morin C, Taylor K, Steele D. 2002. Evalua- tion of the National Youth Anti-Drug Campaign: Fifth Semi-annual Report of Findings. Delivered to: The National Institute on Drug Abuse. WESTAT Corporation and Annen- berg School for Communication.

Hosey GM, Freeman WL, Stracqualursi F, Gohdes D. 1990. Designing and evaluating diabe- tes education material for American Indians. Diabetes Educator. 16(5): 407–414.

Houston TK, Allison JJ. 2002. Users of Internet health information: Differences by health status. Journal of Medical Internet Research. 4(2): E7.

Institute for Healthcare Advancement. 2003. Health Literacy: An Overview and Research- Supported Solutions. [Online]. Available: http://www.iha4health.org/pdf/research_ brochures.pdf [accessed: December 9, 2003].

IOM (Institute of Medicine). 2000. Promoting Health: Intervention Strategies from Social and Behavioral Research. Smedley BD, Syme SL, Editors. Washington, DC: National Academy Press.

IOM. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Wash- ington, DC: National Academy Press.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

140 HEALTH LITERACY

IOM. 2002. Speaking of Health: Assessing Health Communication Strategies for Diverse Populations. Washington, DC: The National Academies Press.

IOM. 2003a. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, Editors. Washington, DC: The National Academies Press.

IOM. 2003b. Priority Areas for National Action: Transforming Healthcare Quality. Adams K, Corrigan JM, Editors. Washington, DC: The National Academies Press.

Jolly BT, Scott JL, Feied CF, Sanford SM. 1993. Functional illiteracy among emergency department patients: A preliminary study. Annals of Emergency Medicine. 22(3): 573– 578.

Jolly BT, Scott JL, Sanford SM. 1995. Simplification of emergency department discharge instructions improves patient comprehension. Annals of Emergency Medicine. 26(4): 443–446.

Kalichman SC, Benotsch E, Weinhardt L. 2001. Quality of health information on the Internet. Journal of the American Medical Association. 286(17): 2092–2093; author reply 2094– 2095.

Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. 1993. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey (NALS). Washington, DC: National Center for Education Statistics, U.S. Department of Education.

Kumanyika SK, Adams-Campbell L, Van Horn B, Ten Have TR, Treu JA, Askov E, Williams J, Achterberg C, Zaghloul S, Monsegu D, Bright M, Stoy DB, Malone-Jackson M, Mooney D, Deiling S, Caulfield J. 1999. Outcomes of a cardiovascular nutrition coun- seling program in African-Americans with elevated blood pressure or cholesterol level. Journal of the American Dietetic Association. 99(11): 1380–1391.

Lazarus W, Mora F. 2000. Online Content for Low-income and Underserved Americans: The Digital Divide’s New Frontier. A Strategic Audit of Activities and Opportunities. Santa Monica, CA: The Children’s Partnership.

Lillington L, Royce J, Novak D, Ruvalcaba M, Chlebowski R. 1995. Evaluation of a smoking cessation program for pregnant minority women. Cancer Practice. 3(3): 157–163.

Lincoln JS. 2003. The Dream in Native American and Other Primitive Cultures. New York: Dover Publications.

Logan PD, Schwab RA, Salomone JA 3rd, Watson WA. 1996. Patient understanding of emergency department discharge instructions. Southern Medical Journal. 89(8): 770– 774.

Long A, Scrimshaw SC, Hernandez N. 1992. Transcultural epilepsy services. In: Rapid As- sessment Procedures: Qualitative Methodologies for Planning and Evaluation of Health Related Programmes. Scrimshaw NS, Gleason GR, Editors. Boston, MA: International Nutrition Foundation for Developing Countries. Pp. 205–214.

Maguire P. 1999. How direct-to-consumer advertising is putting the squeeze on physicians. ACP-ASIM Observer. March.

Matthews M Jr. 2001. Who’s Afraid of Pharmaceutical Advertising? A Response to a Chang- ing Health System. Policy Report 155. Lewisville, TX: Institute for Policy Innovation.

Mazur DJ. 2003. The New Medical Conversation: Media, Patients, Doctors and the Ethics of Scientific Communication. New York: Rowman and Littlefield.

MCCAP. 2003. Who We Are. How Does MCCAP Work? [Online]. Available: http://www. mccapny.org/about.htm [accessed: December, 2003].

Medvantx. 2003. How Can Medvantx Help You Manage Escalating Drug Costs? [Online]. Available: http://www.medvantx.com/ [accessed: October, 2003].

Morse A. 2003. Language Access: Helping Non-English Speakers Navigate Health and Hu- man Services. National Conference of State Legislature’s Children’s Policy Initiative.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

CULTURE AND SOCIETY 141

Murray E, Lo B, Pollack L, Donelan K, Catania J, White M, Zapert K, Turner R. 2003. The impact of health information on the internet on the physician-patient relationship: Pa- tient perceptions. Archives of Internal Medicine. 163(14): 1727–1734.

Nutbeam D. 2000. Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International. 15(3): 259–267.

Perez-Stable EJ. 1994. Cardiovascular Disease in Latino Health in the US: A Growing Chal- lenge. Washington, DC: American Public Health Association.

Powers RD. 1988. Emergency department patient literacy and the readability of patient- directed materials. Annals of Emergency Medicine. 17(2): 124–126.

Program for Appropriate Technology in Health. 2003. Plain Talk: Teaching Low-Literate Youth in the United States about HIV, AIDS, and STDs. [Online]. Available: http:// www.path.org/about/f_plain_talk.htm [accessed: December, 2003].

Raymond EG, Dalebout SM, Camp SI. 2002. Comprehension of a prototype over-the-counter label for an emergency contraceptive pill product. Obstetrics and Gynecology. 100(2): 342–349.

Rideout V. 2001. Generation Rx.com. How Young People Use the Internet for Health Infor- mation. Menlo Park, CA: Henry J. Kaiser Family Foundation. [Online]. Available: http: //www.kff.org/content/2001/20011211a/GenerationRx.pdf [accessed: February 3, 2003].

Ross R. 1996. Returning to the Teachings: Exploring Aboriginal Justice. Toronto: Penguin Books.

Rudd R, Moeykens BA, Colton TC. 2000. Health and literacy. A review of medical and public health literature. In: Annual Review of Adult Learning and Literacy. Comings J, Garners B, Smith C, Editors. New York: Jossey-Bass.

Sabogal F, Marin G, Otero-Fabogal R, Marin BV, Perez-Stable EF. 1987. Hispanic familial- ismo and acculturation: What changes and what doesn’t? Hispanic Journal Behavioral Sciences. 9: 397–412.

Scrimshaw SC, Souza R. 1982. Recognizing active labor. A test of a decision-making guide for pregnant women. Social Science and Medicine. 16(16): 1473–1482.

Sikorski R, Peters R. 1997. Allergy and immunology on the Internet. Journal of the American Medical Association. 278(22): 2029–2030.

Spandorfer JM, Karras DJ, Hughes LA, Caputo C. 1995. Comprehension of discharge in- structions by patients in an urban emergency department. Annals of Emergency Medi- cine. 25(1): 71–74.

U.S. Census Bureau. 2000. United States Census 2000. Profile of General Demographic Characteristics. Washington, D.C.: U.S. Census Bureau.

U.S. Census Bureau. 2003. American Fact Finder. [Online]. Available: http://factfinder.census. gov [accessed: December, 2003].

Wilke WL. 1994. Consumer Behavior. 4th edition. New York: Wiley. Williams DM, Counselman FL, Caggiano CD. 1996. Emergency department discharge in-

structions and patient literacy: A problem of disparity. American Journal of Emergency Medicine. 14(1): 19–22.

Zborowski M. 1952. Cultural components in response to pain. Journal of Social Issues. 8(4): 16–30.

Zola IK. 1966. Culture and symptoms: An analysis of patients’ presenting complaints. Ameri- can Sociological Review. 31(5): 615–630.

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5

Educational Systems

“People are hearing about overweight and obesity. So they’re trying to figure out how much food they should eat. How much is too much? They’re asking about calories, carbohydrates, vitamins, and fiber. They’re asking about salt, sugar, and portion sizes.

. . . As young medical students, you and I learned more about the patho- physiology of disease than we learned about answering these questions for our future patients.”

Vice Admiral Richard H. Carmona, M.D., M.P.H., F.A.C.S. United States Surgeon General American Medical Association House of Delegates Meeting June 14, 2003

Overall, the U.S. educational systems offer a primary point of inter vention to improve the quality of literacy and health literacy. The educational systems discussed in this chapter are the K-12 system,

the adult education system, and education for health professionals. Public educational systems in the United States are influenced by national policy and funding, but remain under the jurisdiction of and are funded by states and localities.

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EDUCATIONAL SYSTEMS 143

THE K-12 AND UNIVERSITY EDUCATION SYSTEMS

Elementary, middle school, high school, and university education pro- vide an opportunity to promote health literacy, to reduce health-risk behav- iors, and to prepare children to navigate the health-care system. Effective health education programs should begin in early childhood and continually build on previous knowledge (NRC, 1999). Achieving health literacy in students is hindered by a lack of continuity in health education programs across the many age groups.

K-12 Education

Health Education Programs

The School Health Policies and Programs Study 2000, conducted by the Centers for Disease Control and Prevention (CDC), indicated that most elementary, middle, and high schools require health education classes as a part of the curriculum (Kann et al., 2001). The majority of these states (75 percent) use the National Health Education Standards (NHES) as a frame- work to develop these programs (Kann et al., 2001). Box 5-1 displays the NHES and some background about these standards. Some states have made significant progress in establishing guidelines in accordance with the NHES.

A lack of consistent, cross-grade health curriculums may reduce stu- dent health literacy. Although most elementary, middle, and high schools require students to take health education, classes in different grades tend not to build upon previous grades. The absence of a coordinated health education program across grade levels may impede student learning. Kann et al. (2001) report an increase in the percentage of elementary schools that require health education from 33 percent in kindergarten to 44 per- cent in grade 5. However, only 27 percent of schools require health educa- tion in grade 6, 20 percent in grade 8, 10 percent in grade 9, and 2 percent in grade 12.

Teacher education may affect teacher effectiveness in implementing health and health literacy curriculums. National and international strate- gies developed to help schools implement effective policies and programs (e.g., Kolbe et al., 1997, 2001) are complicated by the fact that few health education teachers majored in health education (Collins et al., 1995; Haus- man and Ruzek, 1995; Kann et al., 2001; Patterson et al., 1996; Ubbes et al., 1999). Only 10 percent of health education classes or courses have a teacher who majored in health education, or in health and physical educa- tion combined (Kann et al., 2001). Peterson and colleagues (2001) suggest that inadequate attention to teacher health literacy has impeded student health literacy. Many teachers feel that they are not prepared to teach specific health topics (Peterson et al., 2001). For example, a sample of 156

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144 HEALTH LITERACY

BOX 5-1 The National Health Education Standards

In 1995, the Joint Committee on National Health Standards published the National Health Education Standards (NHES) subtitled Achieving Health Literacy (Joint Committee on National Health Education Standards, 1995). The standards de- scribe the knowledge and skills essential for health literacy and detail what stu- dents should know and be able to do in health education by the end of grades 4, 8, and 11. The standards describe a health-literate person as a critical thinker and problem solver, a responsible, productive citizen, a self-directed learner, and an effective communicator.

The National Health Education Standards:

1. Students will comprehend concepts related to health promotion and disease prevention.

2. Students will demonstrate the ability to access valid health information and health-promoting products and services.

3. Students will demonstrate the ability to practice health-enhancing behaviors and reduce health risks.

4. Students will analyze the influence of culture, media, technology, and other factors on health.

5. Students will demonstrate the ability to use interpersonal communication skills to enhance health.

6. Students will demonstrate the ability to use goal-setting and decision-making skills to enhance health.

7. Students will demonstrate the ability to advocate for personal, family, and com- munity health.

The NHES identified obstacles that continue to impede health education programs, including:

• Lack of appreciation for the relationship between health status and success in academic and work performance,

• Low levels of commitment by school board members and administrators, • Inadequately prepared teachers, • Insufficient funding for resources and staff development, • Overcrowded curricula with little or no time for health education (Pateman,

2002; Thackeray et al., 2002), • Unconnected and seemingly irrelevant health instruction, • Lack of recognition of the contribution made by health education to the achieve-

ment of the academic goals of schools, • Failure to adequately document student performance in achievement of health

literacy.

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EDUCATIONAL SYSTEMS 145

elementary school staff from five schools in Philadelphia felt only “some- what prepared” to teach health education (Hausman and Ruzek, 1995). These findings highlight the importance of professional development for teachers who provide classroom health education to young students.

Many teachers are also required by state guidelines to include specific topics and standards within their curriculums, often in response to state- mandated tests. Even within good health education curricula, teachers can- not address all topics and issues at a single grade level. Although health education may be included within the required curriculum, it might not be included within state-mandated tests and therefore these topics will receive less attention in the classroom (Pateman et al., 1999). A call to strengthen school health education by health education with state assessment require- ments was made soon after the NHES were published (Collins et al., 1995), but a low level of grant support for health literacy assessment persists.

A national health promotion and disease prevention report recom- mends that the United States increase the proportion of middle, junior, and senior high schools that provide health education to prevent health prob- lems in areas such as unintentional injuries; violence; suicide; tobacco use and addiction; alcohol and other drug use; unintended pregnancy; HIV/ AIDS and STD infection; unhealthy dietary patterns; inadequate physical activity; and environmental health (HHS, 2000).

The World Health Organization (1996) has described several barriers that may impede the implementation of school health programs at local, state, national, and international levels. First, education, health, and politi- cal leaders, as well as the public at large, often do not possess accurate knowledge of modern school health programs and their potential impact on health. Second, many believe the most important function of schools to be the improvement of language, mathematical, and scientific skills. Third, some may not support modern school health programs because some ele- ments of some programs may be controversial (e.g., school programs to educate about, and prevent, HIV infection, other prevalent STDs, and unintended pregnancy). Fourth, modern school health programs require effective collaboration, especially among separate education and health agencies.

Unfortunately, among 38 states that participated in the School Health Education Profiles Study, the percentage of schools that required a health education course decreased between 1996 and 2000, as did the percentage of schools that taught about dietary behaviors and nutrition, and about how HIV is transmitted. During the year 2000, only 27 percent of schools required health education in grade 6, a number that fell to 2 percent in grade 12 (Storch et al., 2003). A similar pattern is observed in Canadian schools. In 1999, over 70 percent of Canadian school districts reported that health education was mandatory in grades 3 through 5, but only 20 percent

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146 HEALTH LITERACY

reported that it was mandatory in grade 12 (McCall et al., 1999). When children are at an age when health risk behaviors increase (Smith, 1999), American schools require little education about health (Grunbaum et al., 2002). Unless health education is considered part of basic education, the quantity and quality of health education in U.S. elementary and secondary schools are likely to deteriorate further.

A report from an Institute of Medicine Committee on Comprehensive School Health Programs in Grades K-12 (IOM, 1997) recommended that the United States improve its school health programs. A report from the World Health Organization (1997) made similar recommendations for all nations to take similar measures. Recent surveys show that school adminis- trators, parents, students, and the public at large all want elementary and secondary schools to implement more comprehensive school health pro- grams (The Gallup Organization, 1994; Marzano et al., 1998).

Health professionals, such as school nurses, food service directors, health teachers, physical education teachers, and school psychologists, are already working in many elementary and secondary schools (Marx et al., 1998). Many state education and health departments also employ staff to help schools implement school health programs, as do many national non- governmental education and health organizations (CCSSO, 2003). These programs provide a potential target for further intervention.

Science Education

Science education provides a clear opportunity for implementation of health literacy education programs and content. An example of this asso- ciation is the Curriculum Linking Science Education and Health Literacy program. This project transformed inner-city children’s, teachers’, and par- ents’ or care givers’ experiences with food into an inquiry-based science program. Guidelines for science education include content standards for personal and community health (American Association for the Advance- ment of Science, 1993; NRC, 1996).

Science teachers have indicated that scientist participation can strengthen science education. A survey called “The Bayer Facts of Science Education V,” conducted by Bayer Corporation and the National Science Teachers Association (1999), indicated that 98 percent of the science teachers believe that direct student–scientist interaction within classroom was important. These findings suggest an opportunity for science and health-care professionals to participate in school science and health educa- tion programs to improve the health literacy of pre-college students. In fact, more than half of 107 elementary school teachers at 31 schools re- ported wanting classroom visits by health professionals (Thackeray et al., 2002).

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EDUCATIONAL SYSTEMS 147

Literacy Education

The subject of literacy instruction and achievement in schools, particu- larly reading, is more conspicuous in the political and mainstream arenas than is health education. While health education holds promise in promot- ing full health literacy insofar as it leads to the acquisition of the necessary health-related knowledge, the issue of basic literacy is equally essential to full health literacy. As detailed in previous chapters, much of the research on health literacy documents the difficulties with printed health texts expe- rienced by adults who are low in overall literacy skill.

Two influential reports have been issued by the National Research Council (NRC, 1998) and the National Institute of Child Health and Hu- man Development (National Reading Panel, 2000) addressing the failure of schools to produce adults who are sufficiently literate to participate in an increasingly information-driven and competitive economy. These reports, along with a collection of Congressional mandates, helped lead to the No Child Left Behind legislation,1 which is driving major instructional change designed to improve the levels of achievement in the schools. The major strategy of No Child Left Behind is to hold all schools accountable for ensuring that students achieve certain standards in subjects that comprise basic education, including language, science, and mathematics. It is too soon to report any results of these changes, but increasing numbers of schools and school districts are attending to the issues raised by the national concern with literacy achievement.

College and University Health Education

Nearly two-thirds of the 27 million 18- to 24-year-olds in the United States become college undergraduates (U.S. Department of Education, 2001). Unfortunately, relatively few of the nation’s 2- and 4-year colleges and universities currently require or provide education about health (Keel- ing, 2001; Patrick et al., 1992). In a summary from a symposium on health and higher education, the Association of American Colleges and Universi- ties suggested that these institutions are well situated to address issues critical to health literacy, “. . . to discover the causes and cures for diseases and to explain how people can be engaged, individually and collectively, in the improvement of their own lives and the lives of others” (Burns, 1999). But a summary from their 2001 symposium noted that: “. . . as a nation, we have not made the health of college students a priority; we lack a strong commitment to addressing health on campus, a coordinated strategy to

1No Child Left Behind Act of 2002. P.L. 107-110.

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148 HEALTH LITERACY

improve health among students, and—most important—a focus on the capacity of students themselves to contribute to solving health problems” (Association of American Colleges and Universities, 2002).

One of the National Health Objectives calls for the United States by the year 2010 to “increase to 25 percent the proportion of college and univer- sity students who receive information from their institution on each of the six priority health-risk behavior areas (injuries, tobacco use, alcohol and illicit drug use, sexual behaviors that cause unintended pregnancies and sexually transmitted diseases, dietary patterns that cause disease, and inad- equate physical activity)” (HHS, 2000). In 1995, only 6 percent of 18- to 24-year-old undergraduates in the United States received information about all six topics (Douglas et al., 1997), despite the fact that these college students were substantially more likely to engage in most of these health risk behaviors than high school students (Kann et al., 1996). Neither stan- dards nor instruments to assess their attainment have been developed to support critical health knowledge and skills that undergraduate students could acquire as part of their college education.

Finding 5-1 Significant obstacles and barriers to successful health lit- eracy education exist in K-12 education programs.

Strategies and Opportunities in K-12 and University Systems

Although the difficulties in addressing health literacy in education are considerable, targeted solutions can be developed if the factors that contrib- ute to these difficulties are identified. State and local programs can use the educational system’s potential for addressing the issue of health literacy to produce change. St. Leger (2001) proposes that government investment into teacher professional development, research into school health frame- works, and wider dissemination of effective school health programs will improve health literacy. In addition to health education programs, opportu- nities for health literacy instruction exist that embed health literacy content into basic literacy teaching. In this section, these two types of approaches are described, issues with the assessment of health literacy in educational settings are explored, and examples of ongoing approaches are offered.

Opportunities for Health Education Programs

Many studies have provided evidence that school health programs can improve critical health knowledge, attitudes, and skills among elementary and secondary school students and the evidence suggests that school health programs can improve health behaviors and health outcomes (Kolbe, 2002). The CDC has initiated a project called “Programs-That-Work” to identify

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EDUCATIONAL SYSTEMS 149

effective health education programs that reduce health-risk behaviors (for review, see Collins et al., 2002). These health-risk behaviors are those stressed by the U.S. Department of Health and Human Services Healthy People 2010 program (2000). Lohrmann and Wooley (1998) have pro- posed that successful health education curriculums should meet the follow- ing criteria:

1. Be research-based and theory-driven. 2. Include information that is accurate and developmentally appro-

priate. 3. Actively engage students using interactive activities. 4. Allow students to model and practice relevant social skills. 5. Discuss how social or media influences affect behavior. 6. Support health-enhancing behavior. 7. Provide adequate time for students to gain knowledge and skills. 8. Train teachers to effectively convey the material.

Health education programs have the opportunity to provide students with practice in negotiating the health-care system. Specific instruction might include such activities as roleplaying to become familiar with the many different interactions that occur between the health-care provider and the patient (Purtilo and Haddad, 1996). Arguably the most effective means to improve health literacy is to ensure that education about health is a part of the curriculum at all levels of education. Schools and colleges could incorporate health literacy education into a range of exiting programs and services such as health services, health education, food services, physical education, and counseling, psychological, and social services (Kolbe, 1986).

Strategies for Health Literacy Instruction

With the increasing pressure on schools today to include more and more academic content, educators are justifiably reluctant to add one more content area to their already overflowing plates. However, health literacy instruction can be embedded into existing science and health education, and even mathematics and social studies, as well as literacy instruction for children and adults.

There is a sound justification for embedding health literacy instruction into existing literacy instruction for children and adults. Educational re- search for at least the last few decades has documented the impact of context and content on learning, retention, and transfer. This research has shown that learners retain and apply information best in contexts similar to those in which they learned it (Bereiter, 1997; Mayer and Wittrock, 1996; Perkins, 1992).

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150 HEALTH LITERACY

Literacy practitioners and scholars have taken these findings and ap- plied them to the vexing problem of why literacy skills learned in school are often not applied to literacy tasks in life. One obvious implication of this research is that reading and writing skills must be learned in the context of texts and literacy purposes that readers will encounter out in the world. Therefore, one needs to teach reading skills in those contexts. Health texts and purposes for reading them make up one of those real-life literacy domains. A survey conducted by Bayer and the National Science Teachers Association (Bayer Corporation and the National Association of Science Teachers, 1999) indicated that 98 percent of science teachers surveyed believe that direct interaction within classroom with health professionals was important. These findings suggest that the participation of health-care professionals in school health education programs would improve the health literacy of pre-college students.

Embedding health literacy instruction can be done with the two types of literacy instruction needed to improve health literacy: basic print literacy instruction and literacy instruction in text types common to the field of health literacy. This latter type of instruction introduces the idea of teach- ing functional print literacy based on using and understanding real-life text types. Several studies, funded by the National Science Foundation and the Interagency Educational Research Initiative, have examined the outcomes of introducing more expository texts2 into primary-grade instruction dur- ing years typically devoted to basic literacy learning. One study looked at the effect on basic literacy growth of adding non-narrative texts to the typical mix of stories used by first- and second-grade teachers (Duke, 2000). Results indicate that students whose teachers diversified their materials learned as much as those who did not, confirming that this approach was not detrimental to the development of beginning reading skill and writing abilities.

A longitudinal study, termed the TEXT study (Purcell-Gates and Duke, 2000), has shown that children as young as second and third graders can grow in their abilities to read and to write two types of texts often found in the health field: science informational texts and science procedural texts. Since individual unfamiliarity with different text types often used to convey health information is a health literacy challenge, this study is important in that it is the only one to date that addresses the teaching of text types specifically, and, in this case, the teaching of health literacy-significant text types. For this study, second- and third-grade teachers were randomly as- signed to one of two conditions: (a) The Authentic Only condition, where teachers had their students reading science informational and science proce-

2Expository texts are statements or rhetorical discourse intended to give information about or an explanation of difficult material.

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EDUCATIONAL SYSTEMS 151

dural texts that were constructed similar to those found in the real world for real-world purposes of learning new science information or for actually conducting experimental procedures. They also wrote science informational texts and science procedural texts for real-world purposes of providing readers with information of providing written procedures that allow read- ers to conduct scientific investigations. (b) The Authentic-plus-Explicit con- ditions added explicit teaching of language features associated with each text type to the authentic reading and writing just described for condition (a). Examples of language features include (for science informational texts) generic nouns (whales rather than Willy the Whale) and timeless verbs (whales eat rather than Willy the Whale ate) and (for science procedural texts) a materials section before the ordered steps that are usually num- bered.

Analysis of the TEXT data indicates that the children in both condi- tions grew significantly in their abilities to read and write these science- related text types. Although no significant differences were found due to explicit teaching of the language features, their reading comprehension and writing ability of these two types of texts were significantly related to how authentic the reading and writing assignments were in each class. All of the students learned the features of these two text types commonly employed in the health field, and those students whose teachers used more ‘authentic’ texts and purposes for reading and writing them learned them to a greater degree. The fact that this can occur at such an early age implies that one does not need to wait until middle or high school to begin teaching about the different text types so commonly used to convey health information. This study was funded by the National Science Foundation and the Inter- agency Education Research Initiative.

Several studies funded by the National Science Foundation and the Interagency Educational Research Initiative have examined the outcomes of introducing more expository texts into primary-grade instruction during years typically devoted to basic literacy learning. A study by Duke (2000) looked at the effect on basic literacy growth of adding non-narrative texts to the typical mix of stories used by first- and second-grade teachers. Re- sults are showing that students whose teachers utilized different types of texts in the lessons grew as much as those who did not, confirming that children this young could read and learn from non-narrative texts and that this approach was not detrimental to the development of beginning reading skill and writing abilities.

Assessment of Health Literacy in Educational Settings

It is possible to evaluate basic literacy and functional print literacy, and it is important to be clear when conceptualizing and building valid assess-

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152 HEALTH LITERACY

ments. Effective recommendations depend on clear, accurate assessments. But much work remains to be done on the specific and targeted issue of health literacy assessment in educational settings.

Educational assessments generally include formative and summative components. Formative assessments are constructed so that test results can directly inform and shape ongoing instruction. They should provide feed- back to teachers and to school systems regarding how well the instruction meets the learning needs of their students. The major effort of assessment should be devoted to informed formative assessment.

Summative assessments are a part of instructional contexts, and serve primarily to rate, or grade, the student on how well they learned what was taught. Within the health literacy context, summative assessments can be used to make judgments about individual persons regarding their “level” of health literacy.

Health literacy programs in schools and colleges can be designed to accomplish four distinct, but overlapping and interdependent, types of goals (Kolbe, 2002). First, such programs can be designed to improve health literacy; that is, improve important health knowledge, attitudes, and skills. The Council of Chief State School Officers (which represents the nation’s state school superintendents) established a State Collaborative on Assess- ment and Student Standards (SCASS) to assess student achievement in sev- eral context areas. To assess health literacy, SCASS created an Assessment Framework Matrix (Council of Chief State School Officers and State Col- laborative on Assessment and Student Standards, 1998) that was used to develop test items within nine content areas3 and six core concepts and skills4 that reflect the NHES for elementary, middle, and high school stu- dents (Joint Committee on National Health Education Standards, 1995). The major purpose of the SCASS Health Education Assessment Project is to improve health literacy by guiding improvements in school health educa- tion planning and delivery (Pateman, 2003).

Examples of Current Approaches

Several state organizations have developed programs to address health literacy education in kindergarten through high school. Many examples of programs are detailed in the State Official’s Guide to Health Literacy

3These nine content areas are: alcohol and other drugs, injury prevention, nutrition, physi- cal activity, sexual health, tobacco, mental health, personal and consumer health, and com- munity and environmental health.

4These six core concepts and skills are: accessing information, self-management, internal and external influences, interpersonal communication, decision-making/goal- setting, and advocacy.

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(Matthews and Sewell, 2002). For example, the state of California has developed a tool to aid health education curriculum development at the local level and to promote collaborations between schools, parents, and the community, called “Health Framework for California’s Public Schools, Kindergarten through Grade Twelve” and the State of Alaska produced “Healthy Reading Kits” for grades 2 through 8 (Matthews and Sewell, 2002). The state of New Jersey has implemented core curriculum content standards for comprehensive health and physical education programs which include health literacy. The goal of the standards is to develop citizens who are both health-literate and physically educated. The standards for compre- hensive health and physical education emphasize six primary areas (Morse, 2002):

• Behaviors that cause intentional and unintentional injuries • Drug and alcohol use • Tobacco use • Sexual behaviors that lead to sexually transmitted diseases, includ-

ing HIV infection, and unintended pregnancy • Inadequate physical activity • Dietary patterns that cause disease

Federal programs to address health literacy include the “Media Smart Youth” program developed by the National Institute of Child Health and Human Development (NICHD), and associated with Centers for Disease Control youth media “VERB” campaign (CDC, 2002). With support from the Academy for Educational Development (Academy for Educational De- velopment, 2002), NICHD has developed this youth health and fitness media literacy campaign, which has the potential to enhance 9- to 13-year- old after-school programs’ curriculums in health literacy. Another example of federal activity in health literacy is the Curriculum Linking Science Edu- cation and Health Literacy program, funded by the National Center for Research Resources. The goal of this project was to transform the food experiences of inner-city children, teachers and parents, and caregivers into an inquiry-based science program. Barton and colleagues (2001) reported that mothers who spend time engaged in science activities with their chil- dren are more likely to have a more personal, dynamic, and inquiry-based view of science; whether this also affects parent’s or children’s health lit- eracy is unclear.

The private sector has also developed approaches which may improve health literacy in youth. Inflexxion® Incorporated has developed “Special Report” (Inflexicon, 2001), a curriculum-based tobacco education pro- gram for middle and junior high school students, supported by the National Cancer Institute small business innovative research program. The short

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154 HEALTH LITERACY

program includes an interactive game, animation, and audio; a section on media literacy helps students analyze tobacco advertisements; and a skill- building module includes video of situations in which actors are presented with tobacco and peer stories from older youths who have used or avoided tobacco. The effectiveness of this program is being examined in a controlled clinical trial of 270 children from 12 schools throughout the Massachusetts region representing diverse urban, suburban, and rural populations as well as socioeconomic, racial, and cultural backgrounds. Inflexxion® hopes to distribute this program to schools, community organizations associated with tobacco control, and pediatric practices.

THE ADULT EDUCATION SYSTEM5

Individuals were asked to provide information on their use of adult education programs to improve reading, writing, math, or English language skills in the 1992 National Adult Literacy Survey (NALS). Nearly half (46.8 percent) of those who reported using English language instruction took either a basic skills or English language adult education course. In addition, 11.3 percent of high school dropouts and 13.3 percent of high school graduates with NALS Levels 1 or 2 skills reported participation in basic skills classes. This suggests that adult education is an important resource, and may be particularly important to individuals with limited literacy or limited English proficiency.

The Context of the Adult Education System

A major source of support for American adult education programs in literacy is the U.S. adult basic education and literacy (ABEL) system. ABEL, founded through the 1998 Workforce Investment Act,6 receives $500 mil- lion in federal funds and $800 million in state funds annually. ABEL pro- grams provide classes in topics that support health literacy including basic literacy and math skills, English language, and high school equivalence.

ABEL is administered by state agencies, usually education, labor, or employment departments, which in turn fund local service programs. Some ABEL programs also receive local governments or private support. ABEL administration, research, and information activities are carried out by the U.S. Department of Education’s Office of Vocational and Adult Education,

5The committee thanks John Comings, Ed.D., for his contributions to this section of the report.

6Workforce Investment Act of 1998. P.L. 105-220, 1998 H.R. 1385, enacted on August 7, 1998, 112 Stat 936. Codified as: Section 504 of the Rehabilitation Act, 29 U.S.C. § 794d.

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EDUCATIONAL SYSTEMS 155

the National Institute for Literacy, and the National Center for the Study of Adult Learning and Literacy (NCSALL). Thus, ABEL represents a collabo- rative activity that spans government, private, and volunteer activities at the federal, state, and community levels, which could have a large effect on health literacy.

In fiscal year 1998, the ABEL system provided English language ser- vices to approximately 2 million adults, high school equivalence prepara- tion services to 800,000 adults, and basic skills services to 1,300,000 adults (U.S. Department of Education, 1999). Each year, between 3 million and 4 million adults spend some time in an ABEL program. Though the mean hours of participation is only 72, a significant percentage of students drop out within the first 30 hours, and so more than half of the students are receiving at least 100 hours of instruction. Most of these adults are in the primary target population of health literacy programs. ABEL programs are, therefore, an effective venue for health literacy activities. However, the potential demand for these services was much greater and may be affected by the fact that the ABEL system has limited resources for one-time devel- opmental costs that produce curriculum, materials, and teacher training designs. These efforts, and effective adult education programs to improve health literacy, could be made available to more people through a coopera- tive effort between the health system and the ABEL system to undertake a research and development agenda that would lead to educational programs that served the needs of health literacy and the needs of English language and basic skills instruction.

Strategies and Opportunities in the Adult Education System

Adult education theory maintains that people prefer and want informa- tion that is relevant to their current situation, and they tend to learn better when the environment is open and encouraging (or facilitative) rather than narrow and passive (or restrictive) (Knowles, 1980). The complexities of the health-care system today require that information be constructed and delivered with consideration for literacy and culture, and cast within a problem-solving or behavioral context (the “how-to” approach). This how- to approach should be geared to the behavioral information needed to act. While general facts about cancer, nutrition, or care-giving are helpful, un- less the health information is cast within a problem-solving context, it is often lost. In many print and oral instructions, the reader does not encoun- ter the behavior information early enough. Most people need to have advice that makes sense to them and is logical from their own perspective (Doak et al., 1996). For example, instructions provided to an elderly man with dia- betes on the importance of foot care would be more effective if the informa- tion is presented within the context of how to achieve the necessary care.

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156 HEALTH LITERACY

Green and Kreuter (1999) reported that simple acquisition of knowl- edge does not necessarily produce change: there may be motivational and informational gaps. In other words, “getting the message out” does not mean that people will act on the information. There is a need for better understanding of how people learn, as well as what factors influence infor- mation-seeking and how literacy contributes to health behaviors. Theories of learning and health education principles can offer explanations for health behaviors and actions and can point to promising ways to create meaning- ful messages (Meade, 2001). Learning theories can aid in recognizing the mechanisms whereby knowledge, attitudes, and behaviors can be poten- tially modified and adopted (Bandura, 1977; Becker, 1974; Becker et al., 1977; Bigge, 1997; Hochbaum, 1958; Pender, 1996; Rosenstock, 1966). Freire (1973) suggests that knowledge about health issues can be gained through participatory methods. This approach, called problem-solving edu- cation, encourages learners to be critical thinkers about health issues: the process encourages ongoing learner participation and input. This perspec- tive of involving consumers in the educational process is consistent with literacy solutions that value the voice of the people.

Incorporating Health Content into Adult Education Programs

Most classes for adults studying for their high school equivalence are narrowly focused on the requirements of the GED test or other certification system. However, health content has always been part of basic skills and English language services. About 10 years ago, a number of professionals in the field became interested in expanding health content in the ABEL cur- riculum. This interest arose out of a need to find content that was compel- ling for adults so as to increase their motivation to practice the language, literacy, and math skills learned in class, and health is a topic of high interest to almost all students. Initial efforts focused on specific diseases, such as breast cancer, and traditional school health topics, such as nutri- tion. Work by NCSALL has expanded this focus to include the issues of access, navigation, prevention, screening, and chronic disease management (Rudd, 2002).

Adult literacy researchers have begun to empirically examine the effects of using authentic (real-life) materials and activities for teaching adults to read and write. For example, Howard-Pitney et al. (1997) tested the effect of dietary intervention for low-literacy, low-income adults and found an increase in nutrition knowledge. A federally funded study, using a nation- wide sample of adult literacy classes and students, found that students whose teachers incorporated texts for real-life purposes (like reading news- papers to learn the news rather than underline the verbs) began to read and write more often in their lives and to read and write more complex texts

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(Purcell-Gates et al., 2000, 2002)7 In contrast to these findings, Murphy et al. (1996) reported no significant change in nutrition knowledge or self- reported consumption behaviors.

These findings are beginning to be incorporated into adult literacy teaching. For example, a handbook has been published for teachers who wish to begin to use more real-life texts and literacy activities while still teaching their students the skills of reading and writing (Jacobson et al., 2003). Teachers are encouraged to identify the types of life activities their students engage in that require more advanced reading skills. The domain of health and health maintenance is one obvious topic.

Within this type of instruction, teachers obtain typical health-related texts like prescription labels, consent forms, health history forms, and health-related Internet sites and construct lessons in which students learn not only how to decode and comprehend health-specific words but also what information is being conveyed by different texts and why it is impor- tant. The students are taught measurement terms, commonly used abbre- viations, how to keep track of vaccinations and medications, and so on. Reports from existing programs for adult health literacy instruction have been positive (Doak et al., 1996). Building on students’ present needs and experiences may add to already existing programs to bring more relevancy and meaning to the instruction (Perkins, 1992; Purcell-Gates et al., 2000). Findings from national surveys indicate that both state directors of adult education programs and adult education teachers are interested in and supportive of an integration of literacy skill development and health-related tasks and content (Rudd and Moeykens, 1999; Rudd et al., 1999).

Finding 5-2 Opportunities for measuring literacy skill levels required for health knowledge and skills, and for the implementation of programs to increase learner’s skill levels, currently exist in adult education programs and provide promising models for expanding programs. Studies indicate a desire on the part of adult learners and adult education programs to form partnerships with health communities.

EDUCATION FOR HEALTH PROFESSIONALS

There are many demands for time and space in the curricula of health professional schools, including schools of medicine, dentistry, pharmacy, nursing, and public health. Further, continuing education efforts compete with thousands of topics for the attention of busy health-care providers. Regardless, improved education in health literacy is critical to the develop-

7The reading and writing of more complex texts is associated with higher levels of literacy as defined by the NALS assessment.

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158 HEALTH LITERACY

ment of competent physicians and other health-care providers who can help to improve health literacy and to limit the negative effects of limited health literacy among patients. Furthermore, research should investigate whether increased health literacy skills in care providers such as medical assistants, home health-care workers, and home health aides could contribute to im- proved health-care quality and reduced medical errors. Approaches to edu- cation for health professionals should include both curricular and continu- ing education to reach the greatest number of providers at all stages of career development. The approaches described below may provide a start- ing point for increased integration of health literacy concepts and skills into professional and continuing education programs. Further information on the relationship of health literacy to health-care quality for all categories of providers could help to develop future directions for such integration.

Curricular Approaches

Few official requirements or curricula address health literacy in schools of medicine, public health, nursing, dentistry, or pharmacy. Health literacy issues may be addressed under topics such as patient communication, but they are generally not systematically included in these topics. Plomer and colleagues (2001) reported on the development and implementation phases of a project to improve medical students’ communication with limited lit- eracy patients by incorporating literacy content into the medical student curriculum. In this study, the use of standardized patient cases regarding cancer screening was implemented and results revealed that group discus- sion about literacy was prompted.

There are a few examples of courses or curriculums that should be noted. In 1995, the Harvard School of Public Health initiated an ongoing graduate course for students in public health that focused on health literacy studies, research, theories, and implications (NCSALL, 2001). In addition, the Harvard School of Public Health provides a web site (http://www.hsph. harvard.edu/healthliteracy) about health literacy for researchers and practi- tioners that includes a video slide show, curriculums, literature reviews, annotated bibliographies, and policy initiatives. Another curricular ap- proach took place at the University of Colorado Medical School in Denver where a course on health literacy for medical students was developed and taught during 2000 as part of a grant. This was a temporary initiative however, and was not made a permanent part of the curriculum.

A more formal approach has been instituted at the University of Vir- ginia School of Medicine (Dalton, 2003). This curriculum includes an introductory lecture for first-year medical students, departments, residents, and external institutions that request a presentation on health literacy. A faculty development handbook is given to all faculty teaching courses in

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the first and second year, which provides background information and a list of available health literacy materials. Health literacy concepts are also integrated into other courses in the medical school curriculum; for ex- ample, patient case studies are presented in the second-year “Clinical Prob- lems” course in which patients experience barriers related to communica- tion misunderstandings and language issues. Also in the second year, the required community preceptorship includes a health literacy component. A fourth-year elective focusing on health literacy issues and including a ser- vice component is currently in development and will likely be offered in the spring of 2004. The University of Virginia (UVA) School of Medicine also provides a web interface to help other institutions develop health literacy curricula. It is made up of three main groups of information which can be individually tailored to the needs of an institution: (1) an outline on how UVA established its curriculum, with reference materials that include a faculty development handbook and examples of written cases used at various points of the curriculum; (2) an introductory health literacy lec- ture, examples of illustrations, and a bibliography and resources list; (3) standardized patient cases that illustrate work with patients with limited literacy, that also show how to work with interpreters for the deaf and for non-English-speaking patients; some of these case studies also integrate cultural competency issues.

Continuing Education Approaches

Most health literacy training for health professionals is done under continuing education umbrellas. Continuing medical education (CME) con- sists of those educational activities that serve to increase knowledge, skills, and performance of health professionals. They often are intended to update health professionals on new techniques as well as to expose them to new ideas and concepts relevant to their daily practice (ACCME, 2002). The Accreditation Council for Continuing Medical Education (ACCME) re- ports that over 45,000 directly sponsored CME courses were offered in 2002 to both physician and nonphysician participants (ACCME, 2003).

The Coalition for Allied Health Leadership (CAHL) formed a health literacy team during their 2003 meeting to assess health literacy practices of allied health professionals at the national level. The CAHL team developed a survey to assess further the current level of awareness of the allied health community and to develop materials to help the allied health community better meet their needs. The survey was electronically sent to members of the Health Professions Network and the National Network of Health Ca- reer Programs in Two Year Colleges. Approximately one-third of the re- spondents were unaware of the issues surrounding health literacy, or un-

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160 HEALTH LITERACY

aware of its impact on patient care. In addition, the same percentage also reported a lack of any institutional policy within their organization ad- dressing health literacy or no assessment of the effectiveness of existing policies (Brown et al., in press).

The American Medical Association (AMA) has developed several pro- grams in professional continuing education in health literacy since adopting a policy in 1998 that recognized that limited patient literacy affects medical diagnosis and treatment. The AMA and the AMA Foundation have since raised awareness and shared best practices about health literacy. In 2003, the AMA Foundation, American Public Health Association, the National Council on the Aging, and other public health organizations formed the Partnership for Clear Health Communication, a coalition to increase aware- ness of health literacy and its impact on the nation’s health, and introduced a solution-oriented program that includes the “Ask Me 3” program that promotes communication between health-care providers and patients (AMA, 2003b; Ask Me 3, 2003). In conjunction with California Literacy, Inc., and the California Medical Association (CMA), the AMA and AMA Foundation developed the California Statewide Health Initiative that pro- motes provider–patient communication as a basis for patient understanding (AMA, 2003a). The AMA Foundation, with support from Pfizer, Inc., also links organizations across the country through Health Literacy Coalition, and provides grants to health literacy community service projects.

The AMA Foundation has developed and distributed educational kits to physicians and health-care professionals. This program, “Health Lit- eracy, Let Your Patients Understand,” includes a CD-ROM for use by providers in a continuing education curriculum. The 2003 Health Literacy Educational Kit is the Foundation’s primary tool for informing physicians, health-care professionals, and patient advocates about health literacy. The 2003 Health Literacy Educational Kit is an expanded version of the kit introduced in 2001. Included are a manual for clinicians, a new video documentary, reprintable information, guidelines for continuing medical education credit, and additional resources for education and involvement. The AMA Foundation provides these kits free to AMA Alliance chapters and state, county, and specialty medical societies that make a formal com- mitment to launch health literacy educational programs of their own, and to that end provide an extensive “train the trainer” program with a faculty guide to the clinician workshop and guidelines for local implementation planning.

Finding 5-3 Health professionals and staff have limited education, training, continuing education, and practice opportunities to develop skills for improving health literacy.

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Finding 5-1 Significant obstacles and barriers to successful health-literacy edu- cation exist in K-12 education programs.

Finding 5-2 Opportunities for measuring literacy skill levels required for health knowledge and skills, and for the implementation of programs to increase learner’s skill levels, currently exist in adult education programs and provide promising mod- els for expanding programs. Studies indicate a desire on the part of adult learners and adult education programs to form partnerships with health communities.

Finding 5-3 Health professionals and staff have limited education, training, con- tinuing education, and practice opportunities to develop skills for improving health literacy.

Recommendation 5-1 Accreditation requirements for all public and private edu- cational institutions should require the implementation of the NHES.

Recommendation 5-2 Educators should take advantage of the opportunity pro- vided by existing reading, writing, oral language skills, and mathematics curricu- lums to incorporate health-related tasks, materials, and examples into existing les- son plans.

Recommendation 5-3 HRSA and CDC, in collaboration with the Department of Education, should fund demonstration projects in each state to attain the NHES and to meet basic literacy requirements as they apply to health literacy.

Recommendation 5-4 The Department of Education in association with HHS should convene task forces comprised of appropriate education, health, and public policy experts to delineate specific, feasible, and effective actions relevant agen- cies could take to improve health literacy through the nation’s K-12 schools, 2-year and 4-year colleges and universities, and adult and vocational education.

Recommendation 5-5 The National Science Foundation, the Department of Education, and the NICHD should fund research designed to assess the effective- ness of different models of combining health literacy with basic literacy and instruc- tion. The Interagency Education Research Initiative, a federal partnership of these three agencies, should lead this effort to the fullest extent possible.

Recommendation 5-6 Professional schools and professional continuing educa- tion programs in health and related fields, including medicine, dentistry, pharmacy, social work, anthropology, nursing, public health, and journalism, should incorpo- rate health literacy into their curricula and areas of competence.

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REFERENCES

Academy for Educational Development. 2002. AED@work—Media Smart Youth Program. [Online]. Available: http://www.aed.org/about/atWork/mediasmartyouth.html [accessed: September, 2003].

ACCME (Accreditation Council for Continuing Medical Education). 2002. Definition of CME. [Online]. Available: http://www.accme.org/incoming/pol_05_def_cme.pdf [accessed: October, 2003].

ACCME. 2003. ACCME Annual Report Data 2002. [Online]. Available: http://www.accme. org/incoming/156_2002_Annual_Report_Data.pdf [accessed: October, 2003].

AMA (American Medical Association). 2003a. Health Literacy Top Concern of CMA/AMA. [Online]. Available: http://www.ama-assn.org/ama/pub/article/2403-7454.html [accessed: October, 2003].

AMA. May 1, 2003b. AMA Foundation Teams Up to Help Fight Low Health Literacy. [Online]. Available: http://www.ama-assn.org/ama/pub/article/2403-7627.html [accessed: October, 2003].

American Association for the Advancement of Science. 1993. Benchmarks for Science Lit- eracy. Washington, DC: American Association for the Advancement of Science.

Ask Me 3. 2003. Good Guestions for Your Health. [Online]. Available: http://www.askme3. org/ [accessed: October, 2003].

Association of American Colleges and Universities. 2002. Summary of the 2001 Summer Symposium of the Program for Health and Higher Education. College Students As a Challenge and Opportunity for Public Health. Occasional Paper 1. Washington, DC: Association of American Colleges and Universities.

Bandura A. 1977. Social Learning Theory. Englewood Cliffs, NJ: Prentice-Hall. Barton AC, Hindin TJ, Contendo IR, Trudeau M, Yang K, Hagiwara S, Koch PD. 2001.

Underprivelaged urban mothers’ perspectives on science. Journal of Research in Science Teaching. 38(6): 688–711.

Bayer Corporation and the National Association of Science Teachers. 1999. Nation’s Science Teachers Register Concern over U.S. Science Education in New Survey. [Online]. Avail- able: http://www.bayerus.com/msms/news/pages/factsofscience/survey99.html [accessed: August, 2003].

Becker MH. 1974. The Health Belief Model and Personal Health Behavior. Thorofare, NJ: Charles B. Slack.

Becker MH, Maiman LA, Kirscht JP, Haefner DP, Drachman RH. 1977. The Health Belief Model and prediction of dietary compliance: A field experiment. Journal of Health and Social Behavior. 18(4): 348–366.

Bereiter C. 1997. Situated cognition and how to overcome it. In: Situated Cognition: Social, Semiotic and Psychological Perspectives. Kirschner D, Whitsun JA, Editors. Mahwah, NJ: Erlbaum.

Bigge ML. 1997. Learning Theories for Teachers. 5th edition. Reading, MA: Addison-Wesley Educational Publishers.

Brown DR, Ludwig R, Buck GA, Durham D, Shumard T, Graham SS. In press. Health literacy: Universal precautions needed. Journal of Allied Health.

Burns W. 1999. Learning for Our Common Health: How an Academic Focus on HIV/AIDS Will Improve Education and Health. Washington, DC: Association of American Col- leges and Universities.

CCSSO (Council of Chief State School Officers; Society of State Directors of Health, Physical Education, and Recreation; and Association of State and Territorial Health Officials). 2003. Coordinated School Health Programs Staff: 2002–2003 Directory. Washington, DC: Council of Chief State School Officers.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

EDUCATIONAL SYSTEMS 163

CDC (Centers for Disease Control and Prevention). 2002. Youth Media Campaign: VERB Working Together. [Online]. Available: http://www.cdc.gov/youthcampaign/working_ together/index.htm [accessed: September, 2003].

Collins J, Robin L, Wooley S, Fenley D, Hunt P, Taylor J, Haber D, Kolbe L. 2002. Pro- grams-that-work: CDC’s guide to effective programs that reduce health-risk behavior of youth. Journal of School Health. 72(3): 93–99.

Collins JL, Small ML, Kann L, Pateman BC, Gold RS, Kolbe LJ. 1995. School health educa- tion. Journal of School Health. 65(8): 302–311.

Council of Chief State School Officers and State Collaborative on Assessment and Student Standards. 1998. Assessing Health Literacy: Assessment Framework. Santa Cruz, CA: Toucan Education.

Dalton, C (University of Virginia Health System). 2003. Building a Health Literacy Curricu- lum. [Online]. Available: http://www.healthsystem.virginia.edu/internet/som-hlc/home. cfm [accessed: December, 2003].

Doak LG, Doak CC, Meade CD. 1996. Strategies to improve cancer education materials. Oncology Nursing Forum. 23(8): 1305–1312.

Douglas KA, Collins JL, Warren C, Kann L, Gold R, Clayton S, Ross JG, Kolbe LJ. 1997. Results from the 1995 National College Health Risk Behavior Survey. Journal of Ameri- can College Health. 46(2): 55–66.

Duke NK. 2000. 3.6 minutes a day: The scarcity of informational texts in first grade. Reading Research Quarterly. 35: 202–224.

Freire P. 1973. Education for Critical Consciousness. New York: Seabury Press. The Gallup Organization. 1994. Values and Opinions of Comprehensive School Health Edu-

cation in U.S. Public Schools: Adolescents, Parents, and School District Administrators. Atlanta, GA: American Cancer Society.

Green LW, Kreuter MW. 1999. Health Promotion Planning: An Educational and Ecological Approach. 3rd edition. Mountain View, CA: Mayfield.

Grunbaum JA, Kann L, Kinchen SA, Williams B, Ross JG, Lowry R, Kolbe L. 2002. Youth risk behavior surveillance—United States, 2001. Journal of School Health. 72(8): 313– 328.

Hausman AJ, Ruzek SB. 1995. Implementation of comprehensive school health education in elementary schools: Focus on teacher concerns. Journal of School Health. 65(3): 81–86.

HHS (U.S. Department of Health and Human Services). 2000. Healthy People 2010: Under- standing and Improving Health. Washington, DC: U.S. Department of Health and Hu- man Services. [Online]. Available: http://www.health.gov/healthypeople [accessed: Janu- ary 15, 2003].

Hochbaum GM. 1958. Public Participation in Medical Screening Programs: A Sociopsycho- logiocal Study. Public Health Service Publication No. 572. Washington, DC: Govern- ment Printing Office.

Howard-Pitney B, Winkleby MA, Albright CL, Bruce B, Fortmann SP. 1997. The Stanford Nutrition Action Program: A dietary fat intervention for low-literacy adults. American Journal of Public Health. 87(12): 1971–1976.

Inflexicon. 2001. Inflexicon Products: Special Report. [Online]. Available: http://www. inflexxion.com/inf/products/prod_special.html [accessed: September, 2003].

IOM (Institute of Medicine). 1997. Schools and Health: Our Nations Investment. Allensworth D, Lawson E, Nicholson L, Wyche J, Editors. Washington, DC: National Academy Press.

Jacobson E, Degener S, Purcell-Gates V. 2003. Creating Authentic Materials for the Adult Literacy Classroom: A Handbook for Practitioners. Cambridge, MA: World Education Inc.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

164 HEALTH LITERACY

Joint Committee on National Health Education Standards. 1995. National Health Education Standards: Achieving Health Literacy. Atlanta, GA: American Cancer Society.

Kann L, Warren CW, Harris WA, Collins JL, Williams BI, Ross JG, Kolbe LJ. 1996. Youth risk behavior surveillance—United States, 1995. Journal of School Health. 66(10): 365– 377.

Kann L, Brener ND, Allensworth DD. 2001. Health education: Results from the School Health Policies and Programs Study 2000. Journal of School Health. 71(7): 266–278.

Keeling R. 2001. Briefing Paper: College Students As a Challenge and an Opportunity for Public Health. Washington, DC: Association of American Colleges and Universities.

Knowles MS. 1980. The Modern Practice of Adult Education: From Pedagogy to Andragogy. Chicago, IL: Association Press/Follet.

Kolbe L, Jones J, Birdthistle I, Whitman C. 2001. Building the capacity of schools to improve health. In: Critical Issues in Global Health. Koop CE, Pearson C, Schwarz M, Editors. San Francisco, CA: Jossey-Bass.

Kolbe LJ. 1986. Increasing the impact of school health promotion programs: Emerging re- search perspectives. Health Education. 17(5): 47–52.

Kolbe LJ. 2002. Education reform and the goals of modern school health programs. The State Education Standard. 3(4): 4–11.

Kolbe LJ, Collins J, Cortese P. 1997. Building the capacity of schools to improve the health of the nation. A call for assistance from psychologists. American Psychologist. 52(3): 256– 265.

Lohrmann DK, Wooley SF. 1998. Comprehensive school health education. In: A Guide to Coordinated School Health Programs. Marx E, Wooley SF, Northrop D, Editors. New York: Teachers College Press. Pp. 43–66.

Marx E, Wooley S, Northrup D. 1998. Health Is Academic: A Guide to Coordinated School Health Programs. New York: Teachers College Press.

Marzano R, Kendall J, Cicchinelli L. 1998. What Americans Believe Students Should Know: A Survey of U.S. Adults. Washington, DC: U.S. Department of Education, Office of Educational Research and Improvement.

Matthews TL, Sewell JC. 2002. State Official’s Guide to Health Literacy. Lexington, KY: The Council of State Governments.

Mayer RE, Wittrock MC. 1996. Problem-solving transfer. In: Handbook of Educational Psychology. Berliner DD, Calfee RC, Editors. New York: Macmillan.

McCall D, Beazley R, Doherty-Poirier M, Lovato C, MacKinnon D, Otis J, Shannon M. 1999. Schools, Public Health, Sexuality and HIV: A Status Report. Toronto: Council of Ministers of Education, Canada.

Meade CD. 2001. Community health education. In: Community Health Nursing: Promoting the Health of Aggregates. 3rd edition. Nies M, McEwen M, Editors. Philadelphia: W.B. Saunders Co.

Morse L. 2002. Improving Health Literacy: An Educational Response to a Public Health Problem. Presentation given at a workshop of the Institute of Medicine Committee on Health Literacy. December 11, 2002, Washington, DC.

Murphy PW, Davis TC, Mayeaux EJ, Sentell T, Arnold C, Rebouche C. 1996. Teaching nutrition education in adult learning centers: Linking literacy, health care, and the com- munity. Journal of Community Health Nursing. 13(3): 149–158.

National Reading Panel. 2000. Teaching Children to Read: An Evidence-Based Assessment of the Scientific Research Literature on Reading and Its Implications for Reading Instruc- tion. Bethesda, MD: National Institute of Child Health and Human Development.

NCSALL. 2001. Health Literacy Curricula. [Online]. Available: http://www.hsph.harvard.edu/ healthliteracy/curricula.html [accessed: September 26, 2003].

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

EDUCATIONAL SYSTEMS 165

NRC (National Research Council). 1996. National Science Education Standards. Washing- ton, DC: National Academy Press.

NRC. 1998. Preventing Reading Difficulties in Young Children. Snow CE, Burns MS, Griffen P, Editors. Washington, DC: National Academy Press.

NRC. 1999. Designing Mathematics or Science Curriculum Programs. A Guide for Using Mathematics and Science Education Standards. Washington, DC: National Academy Press.

Pateman B. 2002. A sharper image for school health education: Hawaii’s “seven by seven” curriculum focus. Journal of School Health. 72(9): 381–384.

Pateman B. 2003. Healthier students, better learners. Educational Leadership. 61(4). Pateman B, Grunbaum JA, Kann L. 1999. Voices from the field—A qualitative analysis of

classroom, school, district, and state health education policies and programs. Journal of School Health. 69(7): 258–263.

Patrick K, Grace TW, Lovato CY. 1992. Health issues for college students. Annual Review of Public Health. 13: 253–268.

Patterson S, Cinelli B, Sankaran G, Brey R, Nye R. 1996. Health instruction responsibilities for elementary classroom teachers in Pennsylvania. Journal of School Health. 66(1): 13– 17.

Pender NJ. 1996. Health Promotion in Nursing Practice. 3rd edition. Stamford, CA: Appleton and Lange.

Perkins DN. 1992. Smart Schools: From Training Memories to Educating Minds. New York: Free Press/Macmillan.

Peterson FL, Cooper RJ, Laird JM. 2001. Enhancing teacher health literacy in school health promotion: A vision for the new millennium. Journal of School Health. 71(4): 138–144.

Plomer K, Schneider L, Barley G, Cifuentes M, Dignan M. 2001. Improving medical students’ communication with limited-literacy patients: Project development and implementation. Journal of Cancer Education. 16(2): 68–71.

Purcell-Gates V, Duke NK. 2000. Explicit Explanation of Genre Within Authentic Literacy Activities in Science: Does it Facilitate Development and Achievement? Grant Proposal funded by NSF/IERI. Grant Proposal funded by NSF/IERI.

Purcell-Gates V, Degener S, Jacobson E, Soler M. 2000. Affecting Change in Literacy Prac- tices of Adult Learners: Impact of Two Dimensions of Instruction. NCSALL Report No. 17. Boston, MA: National Center for the Study of Adult Learning and Literacy.

Purcell-Gates V, Degener S, Jacobson E, Soler M. 2002. Impact of authentic literacy instruc- tion on adult literacy practices. Reading Research Quarterly. 37: 70–92.

Purtilo R, Haddad A. 1996. Health Professional and Patient Interaction. 5th edition. Phila- delphia, PA: W.B. Saunders Co.

Rosenstock IM. 1966. Why people use health services. Milbank Memorial Fund Quarterly. 44(Supplement 3): 94–127.

Rudd RE. 2002. A maturing partnership. Focus on Basics: Connecting Research and Practice. 5(3).

Rudd RE, Moeykens BA. 1999. Adult educators’ perceptions of health issues and topics in adult basic education. NCSALL Report #8. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.

Rudd RE, Zahner L, Banh M. 1999. Findings from a National Survey of State Directors of Adult Education. NCSALL Report #9. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.

Smith AM. 1999. Age of Risk Behavior Debut: Trends and Implications. Washington, DC: Institute for Youth Development.

St. Leger L. 2001. Schools, health literacy and public health: Possibilities and challenges. Health Promotion International. 16(2): 197–205.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

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Storch P, Grunbaum J, Kann L, Williams B, Kinchen S, Kolbe L. 2003. School Health Educa- tion Profiles: Surveillance for Characteristics of Health Education Among Secondary Schools (Profiles 2000). Atlanta, GA: Centers for Disease Control and Prevention.

Thackeray R, Neiger BLBH, Hill SC, Barnes MD. 2002. Elementary school teacher’s perspec- tives on health instruction: Implications for health education. American Journal of Health Education. 33: 77–82.

Ubbes VA, Cottrell RR, Ausherman JA, Black JM, Wilson P, Gill C, Snider J. 1999. Profes- sional preparation of elementary teachers in Ohio: Status of K-6 health education. Jour- nal of School Health. 69(1): 17–21.

U.S. Department of Education, Office of Vocational and Adult Education, Division of Adult Education and Literacy. 1999. State-Administered Adult Education Program 1998 En- rollment. [Online]. Available: http://www.ed.gov/offices/OVAE/98enrlbp.html [accessed: December, 2003].

U.S. Department of Education. 2001. Digest of Education Statistics. Washington, DC: U.S. Government Printing Office.

WHO (World Health Organization). 1996. Improving School Health Programs: Barriers and strategies. Geneva: World Health Organization.

WHO. 1997. Promoting Health Through Schools: Report of a WHO Expert Committee on Comprehensive School Health Education and Promotion. Geneva: World Health Orga- nization.

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6

Health Systems

Mr. G. is a 64-year-old man with chronic hypertension, diabetes, a high cholesterol level, and gout. He saw his primary care doctor because his left leg was swollen and painful. His doctor diagnosed an early cellulitis and prescribes an antibiotic to be taken for 10 days.

After 4 days, Mr. G. went to the emergency department, unable to walk because of intense pain and swelling of his entire left leg. His blood sugar and blood pressure were both very high, and he was admitted to the hospital to treat his infection and control his blood pressure. During his emergency department treatment and admission, he was examined by, and spoke to, four different doctors.

The fifth doctor to take a history and examine Mr. G discovered that he had taken none of his seven chronic medications, nor the newly prescribed anti- biotic given to him when his infection first appeared. Mr. G. explained “You see, I already take 19 pills a day, and when I got another one I got confused about my timing, and I was just so scared I might mess up. My daughter usually helps me with my medicines, but she’s been sick and I didn’t want to worry her.”

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168 HEALTH LITERACY

THE CONTEXT OF HEALTH SYSTEMS

Navigating the U.S. health-care and public health delivery systems is a complex task with numerous layers of bureaucracy, procedures, and processes. Consequently, an adult’s ability or inability to navi-

gate these systems may reflect systemic complexity as well as individual skill levels. Patients, clients, and their family members are typically unfamil- iar with these systems and the associated jargon. Even highly educated individuals may find the systems too complicated to understand, especially when people are made more vulnerable by poor health. Official documents, including informed consent forms, social services forms, and public health and medical instructions, as well as health information materials often use jargon and technical language that make them unnecessarily difficult to use (Rudd et al., 2000).

When you have medical forms and stuff, I don’t think it should be compli- cated for a person to understand what its saying (Rudd and DeJong, 2000).

Some of the complexity of the health-care system arises from the nature of health care and public health itself, the mix of public and private financ- ing, and the health information and health-care delivery settings. Unlike many other countries, the United States does not have a single organized national health-care system. Furthermore, the United States has no national health surveillance system, and few common norms exist for basic preven- tive services such as immunizations. Threats of bioterrorism and new emerg- ing diseases such as SARS continue to complicate the picture of health care.

In the past, health management was primarily the domain of the phy- sician, but greater responsibility for health management has shifted to the patient as health care has evolved and cost pressures on care have in- creased. This has been called self-management, and was identified in the Institute of Medicine (IOM) Priority Areas for National Action report (IOM, 2003b) as one of two cross-cutting issues in improving health-care quality that present the opportunity to improve health across the lifespan, at all stages of health service. In order to make appropriate self-manage- ment decisions, health information consumers must locate health informa- tion, evaluate the information for credibility and quality, and analyze the risks and benefits, activities that rely on health literacy skills. Consumers must be able to express health concerns clearly by describing symptoms in ways the providers can understand. Both patients and health-care provid- ers must be able to ask pertinent questions and fully understand the avail- able medical information.

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HEALTH SYSTEMS 169

FIGURE 6-1 The concentric ecology of organizations in the health-care sector. SOURCE: Health Care Management: Organization, Design, and Behavior, 4th Edi- tion, by Shortell and Kaluzny. © 2000. Reprinted with permission of Delmar Learn- ing, a division of Thomson Learning: www.thomsonrights.com. Fax 800 730-2215.

Improvement of health literacy was identified by the IOM report as an essential component of self-management that would affect nearly all as- pects of health care. The IOM report further noted that system and policy changes to improve self-management would require involvement by most health-care organizations and providers to address all types of health condi- tions, providing a means to improve health care for all Americans. Figure 6-1 below is a depiction of the “ecology of health service organizations” that form the U.S. health system (Shortell and Kaluzny, 2000). This figure illustrates the complex relationships of organizations and programs that form the basis of the U.S. health-care system that adults are expected to navigate.

The organizations with the most direct impact on patients are in the inner circles and those with a more indirect influence are in the outer circles. Although this complex system could be simplified somewhat by consolidating some of the depicted organizations (such as hospitals and physician groups) into a variety of health networks and health systems, other factors deter such consolidation. For example, tightly integrated managed care systems have failed to grow in response to consumer demands for more choice. Accessing and using the systems effectively is further complicated by the mix of private and public financing mecha- nisms and interrelationships.

Individuals and families must learn how to interact with employers, supplemental private insurance companies, federal and state government

Research

Education Employers Insurers

Accreditation Groups

Con su

ltin g

Biotech

Medical Device

Heart Centers

Hospitals Health Networks

Health Systems

Community Health Centers

Patients/Enrolled Populations/Community

Information Technology

Cancer Centers Physician

Groups Home Health Agencies

Ambulatory Surgery Centers

Nursing Homes

Health Departments

Hospices

Venture Capital Pharmaceutical

Multipurpose

Suppliers

Federal Government State Government

Loca l G

ove rnment

Foundations

Professional Associations

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programs, and providers who are paid directly, “out-of-pocket.” To com- plicate matters further, individuals seldom interact with only one aspect of the health-care system. They make decisions about the severity of illness, the ease and cost of various treatment options, and move from self-care to seeking advice, from public to private options, and from primary to tertiary care in complex “patterns of resort” (Scrimshaw and Hurtado, 1987). Yet studies indicate that individuals and families lack the information needed for these activities. Chapter 2 provides evidence that health literacy affects the interaction of individuals with components of the health-care system, and may further affect health status and outcomes. Studies suggest that health information is often more difficult to comprehend than other types of information (Root and Stableford, 1999). Extensive research shows that communication of health information through printed material, multime- dia, and interpersonal exchange is often not successful (Baker and Wilson, 1996; Berland et al., 2001; Davis et al., 1996; Graber et al., 1999; MacKinnon, 1984; Meade et al., 1989; Meeuwesen et al., 2002; Reid et al., 1995; Roter et al., 2001; Rudd, 2003; Rudd et al., 2000; Smith et al., 1998). Print and interactive materials have been consistently found to be less understandable by their audience than the authors intended (Kerka, 2000; Rudd et al., 2000). Complex materials frequently used by employers, insurance companies, government programs, and providers, such as con- sent forms and questionnaires, are difficult for many people to use appro- priately (Gaba and Grossman, 2003; Hochhauser, 1997; Kaufer et al., 1983; Morales et al., 2001; Osborne and Hochhauser, 1999).

All but the most sophisticated health policy experts have difficulty understanding the many facets of health and health care. Most of us are confused by our hospital and medical bills, the choices we have to make regarding health plans and health coverage, and the often contradictory news accounts about the most effective treatments or preventive strategies. Imagine having to face this complexity if you are one of the 90 million American adults who this committee has found “lack the functional literacy skills in English to use the U.S. health care system.”1

1See Finding 3-1: “About 90 million adults, an estimate based on the 1992 National Adult Literacy Survey (NALS), have literacy skills that test below high school level (NALS Levels 1 and 2). Of these, about 40–44 million (NALS Level 1) have difficulty finding information in unfamiliar or complex texts such as newspaper articles, editorials, medicine labels, forms, or charts. Because the medical and public health literature indicates that health materials are complex and often far above high school level, the committee notes that approximately 90 million adults may lack the needed literacy skills to effectively use the U.S. health system. The majority of these adults are native-born English speakers. Literacy levels are lower among the elderly, those who have lower educational levels, those who are poor, minority populations, and groups with limited English proficiency such as recent immigrants.”

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Finding 6-1 Demands for reading, writing, and numeracy skills are intensified due to health-care systems’ complexities, advancements in scien- tific discoveries, and new technologies. These demands exceed the health literacy skills of most adults in the United States.

Emerging Issues in the Health System Context2

In addition to the general complexity of the current system, the com- mittee has identified a number of emerging themes or issues that are impor- tant aspects of the health system context with respect to health literacy. These include

• Chronic disease care and self-management • Patient–provider communication • Patient safety and health-care quality • Access to health care and preventive services • Provider time limitations • Health expenditures • Consumer-directed health care

Each of these topics is briefly discussed in the section that follows, with particular attention to the ways in which these issues may function as barriers to those with limited health literacy. Other issues that are currently salient in the health-care context include health disparities and the increas- ingly complex health information context; these topics are discussed in Chapter 4.

Chronic Disease Care and Self-Management

Chronic disease, and the problem of people having to cope with mul- tiple, comorbid conditions, is a critical issue in health care, particularly as the health-care delivery system becomes more and more complex and pa- tients must become the integrators of their own care. Chronic disease exem- plifies the interaction of health literacy and health, as patients’ health is often dependent on their ability and willingness to carry out a set of health activities essential to the management and treatment of chronic diseases (IOM, 2002c). The last few decades have seen tremendous advances in the

2The information in this section is drawn in part from the background paper “Improving Chronic Disease Care for Populations with Limited Health Literacy,” commissioned by the committee from Dean Schillinger, M.D. The committee appreciates his contribution. The full text of the paper can be found in Appendix B.

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care of chronic conditions, including an array of therapeutic options, risk factor modification for secondary prevention of comorbid conditions, the availability of home monitoring tools, and the growth of disease manage- ment programs (Bodenheimer, 1999; McCulloch et al., 2000). Despite these advances, health quality and clinical outcomes of patients with chronic diseases vary significantly across sociodemographic lines (Fiscella et al., 2000; Piette, 1999, 2000; Vinicor et al., 2000).

Care for those with chronic diseases is more difficult for patients, pro- viders, and families when patients cannot understand or remember the given directions, and or when directions that are given are incomplete and unclear (IOM, 2003b). This is also true in other contexts, such as acute care and public health interventions. The collaboration between patients, pro- viders, the system of care, and the community that is required to optimize health outcomes adds a significant layer of complexity to the delivery of health care to individuals with chronic disease. Effective disease manage- ment is predicated on systematic, interactive communication between a population of patients with the disease and the providers and health system with whom they interact (Norris et al., 2002a, b; Von Korff et al., 1997), all occurring in the context of a supportive community whose resources are aligned with patients’ needs (Wagner, 1995).

Chronic care involves an ongoing process of patient assessments, ad- justments to treatment plans, and reassessments to measure change in pa- tient health status. Without timely and reliable information about patients’ health status, symptoms, and self-care, the necessary health education, treat- ments, or behavioral adjustments may come late or not at all, compromis- ing patients’ health and increasing the likelihood of poor outcomes. Self- management is essential to successful chronic disease care; patients must remember any self-care instructions they have received from their provider, be able to correctly interpret symptoms or results of self-monitoring, and appropriately problem-solve regarding adjustments to the treatment regi- men. Patients also must know when and how to contact the provider should the need arise. A number of studies demonstrate that patients remember and understand as little as half of what they are told by their physicians (Bertakis, 1977; Cole and Bird, 2000; Crane, 1997; Rost and Roter, 1987; Roter, 2000). In addition, because they have knowledge deficits, patients with limited health literacy may be less equipped to overcome such gaps in understanding and memory once they are at home (Williams et al., 1998a, b) and difficulties reading or interpreting instructions (Crane, 1997; Williams et al., 1998b). Cross-sectional studies involving patients with diabetes sug- gest that traditional self-management education may not eliminate health literacy-related disparities in chronic disease outcomes (Schillinger et al., 2002; Williams et al., 1998b). Focus groups of patients with limited health literacy have identified “health system navigation” (such as knowing whom,

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HEALTH SYSTEMS 173

for what, and when to call for assistance with a problem) as a particularly daunting aspect of chronic disease management (Baker et al., 1996).

Building on the Chronic Care Model of Wagner et al. (2001), Schillinger has developed a framework that explores ways to improve chronic disease care and is based on health literacy and related research. This framework is discussed in greater detail in Appendix B, but briefly, the model represents the evidence base for chronic disease care and sup- ports the importance of executive leadership and incentives to promote quality, systems to track and monitor patients’ progress and support timely provider decision-making (Piette, 2000), patient self-management training (Lorig et al., 1999; Von Korff et al., 1997), and community-oriented care. Since self-management practices and clinical outcomes in chronic disease care appear to vary by patients’ level of health literacy (Kalichman and Rompa, 2000; Schillinger et al., 2002; Williams et al., 1998b), the Chronic Care Model, and similar comprehensive, population-based disease man- agement approaches, may offer insights into the ways in which limited health literacy affects chronic disease care and could identify points for potentially successful intervention.

Patient–Provider Communication

To Err Is Human reported that communication failure was the under- lying cause of fully 10 percent of adverse drug events (IOM, 2000b). Man- agement of complex drug therapies, especially in elderly patients, is ex- tremely difficult and requires special attention to the ability of the patient to understand and remember the amount and timing of dose, as well as behav- ioral modifications required by the regimen (e.g., dietary restrictions) (IOM, 2000b). The patient’s health literacy level as it affects the communication process is therefore an important consideration in health outcomes.

There is some evidence of a failure of communication with patients with limited health literacy as currently measured. Patients with chronic diseases and limited health literacy have been shown to have poor knowl- edge of their condition and of its management (Williams et al., 1998a, b), often despite having received standard self-management education. Patients with limited health literacy have greater difficulties accurately reporting their medication regimens and describing the reasons for which their medi- cations were prescribed (Schillinger et al., 2003a; Williams et al., 1995) and more frequently have explanatory models3 that may interfere with adher-

3“Explanatory models are the lenses through which cultures perceive and understand ill- ness. They consist of interpretive notions about aspects of illness and treatment including the cause, the timing and mode of onset of the symptoms, the pathophysiological processes involved, the natural history and severity, and the appropriate treatment” (Kleinman, 1980).

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ence (Kalichman et al., 1999). Understanding these explanatory models is essential to good communication regarding care (Good and Good, 1981; Kleinman, 1980).

While, by definition, patients with limited health literacy have prob- lems with literacy- and numeracy-related tasks in the health-care setting, a recent study among patients with diabetes demonstrated that these patients also experience difficulties with oral communication (Schillinger et al., 2004). Patients appear to have particular problems with both the decision- making and the explanatory, technical components of dialogue. Further- more, patients with limited health literacy may be less likely to challenge or ask questions of the provider (Baker et al., 1996; Street, 1991) and may cope by being passive or appearing uninterested (Cooper and Roter, 2003; Roter, 2000; Roter and Hall, 1992; Roter et al., 1997).

Health literacy is one of a number of influences on the communica- tion process. Communication between a health-care provider and patient during outpatient visits may also be hampered by several related factors. These include the relative infrequency and brevity of visits, language bar- riers, differences between providers’ and patients’ agendas and communi- cation styles and other cultural barriers, lack of trust between the patient and provider, overriding or competing clinical problems, lack of timeli- ness of visit in relation to disease-specific problem, and the complexity and variability of patients’ reporting of symptoms and trends in their health status.

The complexities that arise from the interplay of cultural processes and variations in health literacy underlie communications and interactions in the health-care system. Typically this balance is part of a healing relation- ship governed by cultural beliefs and rituals that manifest as a cultural language. Health-care providers need to comprehend this cultural language in order to reduce misunderstanding. Reciprocal to this understanding are the skills of the people among the different cultural groups to understand what health-care providers are communicating regarding their diagnosis, risks, and treatment options.

Diverse cultural groups value distinct processes by which harmony and balance is maintained in the relationships of everyday life. Typically this balance is referred to as healing and along with the dynamics surrounding human relationships, these become “healing relationships” governed by cultural beliefs and rituals that manifest as culturally based language during health and illness. Cultural contexts dominate healing relationships. “Phy- sicians and other health care providers need communication skills . . . to reduce misunderstanding and the risk of incorrect diagnosis and . . . to develop . . . treatment plans that are compatible with the patient’s reality” (Molina et al., 1994: 35). Reciprocal to this communication are the skills of the people (individual, families, and communities among different cultural

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HEALTH SYSTEMS 175

groups) to understand what health-care providers are discussing about di- agnoses, risks, and treatment options. In contrast, aboriginal peoples have a vision of healing that informs the “process of healing oneself, relationships with families” and “maintaining balance among their mental, physical, emotional and spiritual dimensions as human beings” (Ross, 1996: 147). In Westernized health care, the concept of healing is typically used during experiences with illness or disruptions in health status. In contrast, some aboriginal cultural languages present healing as an aspect of health and everyday living. “Instead healing is seen as an everyday thing for everyone, something which, like sound nutrition, creates health. In short, the healing perspective must be built into the attitudes and process that shape every aspect of everyday” (Ross, 1996: 147).

In another example, Native Hawaiians comprehend healing through a system for maintaining harmonious relationships and resolving conflicts within the extended family; this system is called Ho’oponopono, which means setting to right. The Ho’oponopono process is a conceptual frame- work informed by several cultural concepts that become evident as the steps in the cultural ritual. These include problem identification, discussion, seek- ing forgiveness; release of conflicts and hurts; and the closing phase. Ho’op- onopono is especially useful as a mental health intervention (e.g., for alco- hol or substance abuse, domestic violence, anger) but also complements interventions for coping with diseases.

“Then the ho’ola said Mom should confess to me and before God Jehovah. She did. She asked me to forgive her and I did. I wasn’t angry. . . . And later Mom’s sickness left her. Of course, she still had diabetes, but the rest—being so confused and miserable—all that left her” (Shook, 1985: 109).

This broader humanistic perspective of healing is critical to compre- hend aboriginal and Native Hawaiian health behaviors and to understand the importance of healing rituals for inclusion in treatment options and caring interventions during health and illness. These culturally based views of health suggest a trajectory for forming healing relationships in that they illuminate a fuller range of human experiences during health and illness. Understanding a greater diversity of healing relationships supports health literacy among different cultural groups. To this end, good health commu- nications are a key pathway to building the continuous healing relation- ships that have been cited as an important goal for twenty-first century health-care system design (IOM, 2001). Poor communications and rela- tionships translate into unfavorable outcomes, particularly delays in care seeking, refusal, lack of continuity of care, and disparities (IOM, 2003a).

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Patient Safety and Health-Care Quality4

The IOM report To Err Is Human (IOM, 2000b) clarifies the links between miscommunication and medical and health errors and adverse events. Lack of cultural competence and inattention to health literacy can both compromise patient safety through a number of mechanisms. For example, a variety of problems can result if culture and language are not taken into account including

• Failure to get accurate medical histories • Failure to obtain informed consent • Poor health knowledge and understanding of health conditions • Poor treatment adherence • Medication errors • Lower utilization of preventive and other health-care services • Poor patient satisfaction

To the extent that low health literacy may be more prevalent among some racial and ethnic minority groups, these individuals may be at higher risk for adverse events stemming from poor communication. There is a need to understand the independent contributions of cultural competence and health literacy to patient safety, as well as the interactions between cultural competence and health literacy.

Patients’ varied perspectives, values, beliefs, and behaviors regarding health and illness are consistently cited as integral to quality care in several IOM reports (2001, 2003a). To protect people from undue harm, eliminate errors and adverse events, prevent unnecessary human suffering, and be more accountable to quality and cost-effective care, cultural processes beckon attention, particularly to erode the culture of blame, reform team- work, and redesign organizational dynamics within health-care systems. A principle of patient safety is to include patients in safety designs and the processes of care (IOM, 2000b). To do so, it is essential to understand cultural nuances of what patient safety means to different people and what beliefs, values, and actions inform people’s understanding of safe care come into play.

The communication process plays a central role in this understanding. For example, a recent study in California of pediatric outpatient visits that used Spanish-language interpreters found an average of 31 interpretation errors per pediatric clinic visit (Flores et al., 2003), two-thirds of which had clinical consequences. The errors included errors in the dose and duration

4The committee thanks Arlene Bierman, M.D., M.S., for her contributions to this section of the report.

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HEALTH SYSTEMS 177

of prescribed drugs and missed information on patient allergies. Errors were most common with untrained interpreters. Amoxicillin for an ear infection was translated as one teaspoon three times a day in the ears, rather than by mouth. Steroid ointment for a baby’s face was translated as “rub on the body” and twice a day for three or four days was translated as “in four days.”

In building a safer health-care system, strategies are needed to include culture and communication, inclusive of patients and families, as an inte- gral component of interventions to reduce medical and health errors and adverse events like these.

The interaction of health literacy, culture, language, and safety is not limited to patient safety. Worker safety is also influenced by health literacy. Workers must employ safeguards against hazardous materials and proce- dures. They are expected to read warning labels and right-to-know postings and take important precautionary measures. Yet, for some, the information may not accessible. The potential of low literacy and limited English profi- ciency to affect worker safety has been noted by health and safety educators and unions (Wallerstein, 1992). A recent National Academies workshop on Latino worker safety (NRC, 2003) noted that Spanish-speaking workers are four times more likely to be injured or killed on the job than English- speaking workers. The need to improve and properly translate signage, safety and use instructions, and training procedures is noted in that report (NRC, 2003). Strategies suggested to improve worker safety training in- clude participatory education and popular education approaches (e.g., Wallerstein, 1992). Further research in this area is critical to the develop- ment of successful safety programs.

I prepared all my material, cut all my pieces of Formica, and I opened the can and I didn’t really read the label. There was a red label on the can and even if I would have looked at it, I didn’t know what it was. I couldn’t even read it. Come to find out my lung was poisoned from that material I was using (Rudd and DeJong, 2000).

Crossing the Quality Chasm: A New Health System for the 21st Cen- tury (IOM, 2001) proposed that health-care processes are to be redesigned according to 10 rules, 6 of which allude to cultural context and 5 of which relate to health literacy via information and communications. These rules are shown in Box 6-1. Twenty-first century health care will unravel the complexities that arise from the interplay of cultural processes and health literacy. Proposed changes include customizing care based on patient needs and values and accommodating differences in patient preferences and an-

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178 HEALTH LITERACY

ticipating patient needs. Customizing (to match individual specifications) and tailoring (to adapt for special needs or purpose) approaches to patient care services are based on the assumption that understanding of people’s needs, characteristics, and respect for beliefs and values are operating. Such understanding and respect is rooted in patient-centered care (Gerteis et al., 1993). Customized and tailored information, communication, and educa- tion are integral to individualized care (IOM, 2001). To customize and tailor care means that health literacy is subsumed within a cultural context

BOX 6-1 Rules for Redesigning Health-Care Processes

1. Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health-care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits.

2. Customization based on patient needs and values. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences.

3. The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health-care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared de- cision making.

4. Shared knowledge and the free flow of information. Patients should have un- fettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.

5. Evidence-based decision making. Patients should receive care based on the best available scientific knowledge.

6. Safety as a system property. Patients should be safe from injury caused by the care system.

7. The need for transparency. The health-care system should make available to patients and their families information that allows them to make informed deci- sions when selecting a health plan, hospital, or clinical practice, or choosing among alternative treatments.

8. Anticipation of needs. The health system should anticipate patient needs, rath- er than simply reacting to events.

9. Continuous decrease in waste. The health system should not waste resources or patient time.

10. Cooperation among clinicians. Clinicians and institutions should actively col- laborate and communicate to ensure an appropriate exchange of information and coordination of care.

SOURCE: IOM (2001).

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during clinical encounters. This report also recommended that a “patient- centered” approach be implemented to ensure that patients have full under- standing of all of their options (IOM, 2001).

Access to Health Care and Preventive Services

Literacy and disparities are two sides common to a health phenomenon rather than two separate problems. Data continue to emerge to support the idea that the different needs of particular individuals and groups who have been historically marginalized or disenfranchised due to their ethnic or racial heritage, or social group identity or membership, continue to be unmet by the health-care system (IOM, 2003a). Inattention to patient pref- erences, lack of patient-centered care, and insufficient English proficiency (written or verbal) are contextual qualities that fuel health disparities among particular groups and individuals in the United States. In this way, limited health literacy may be a precursor to and condition of health disparities. Interventions to increase communications, improve access to health infor- mation, promote the understanding of meaning from facts, and transfer knowledge to actions are likely to reduce the negative impact of low literacy on patients’ access and use of health services.

Health services access involves many factors. These include financial ability to use services, lack of appropriate services located where people can reach them, times when services are available, health-care staff’s ability to appropriately navigate language and culture with patients, and respectful treatment of patients. Ethnic background and minority status also influence access to care (IOM, 2003a). Across all populations, the individuals most likely to be dissatisfied with seeking care are members of minority groups. These minority groups indicated they felt their race, ethnicity, and ability to pay for services directly affected their level of care (IOM, 2002b). An IOM report found differences in access and in treatment of patients who are poor, African American, Latino, and American Indian, among others (IOM, 2003a). Health literacy is an additional factor that should be considered when examining access to care and use of preventive services. Preliminary research supports such a link. This research is reviewed in Chapter 3. Briefly, individuals with limited health literacy as determined by the avail- able measures are less likely to use preventive services such as mammograms and pap smears (Scott et al., 2002), and may come to the attention of the health-care system at a more advanced stage of disease (Bennett et al., 1998).

A lack of health insurance and lack of access to affordable services may lead people to postpone or not participate in care, particularly preventative care such as screenings, but also including recommended medical tests, treatments, and prescribed medications (Kaiser Commission on Medicaid

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and the Uninsured, 2003a). Rates of uninsurance in the United States vary by race and ethnicity at 12 percent of Caucasians, 20 percent of Asian Americans, 22 percent of African Americans, more than 25 percent of Native Americans, and more than 33 percent of Hispanics (Kaiser Commis- sion on Medicaid and the Uninsured, 2003b). Uninsured patients are more likely to have poorer health than they would if insured (IOM, 2002a). Many African-American women who are uninsured or underinsured put their families’ welfare ahead of their own, especially when financial re- sources are limited. They seek treatment too late or not at all (IOM, 1999). Further, people who are uninsured or underinsured are more likely to rely on emergency departments for care (IOM, 2002b). An example of this can be seen in asthma. If someone cannot afford the appropriate workup, con- sultation, and medications to properly control asthma, they (or their chil- dren in the case of childhood asthma) will be less likely to prevent attacks that may lead to emergency department use (IOM, 2002b).

The problems created by the financial inability to use services may be exacerbated by health literacy issues, including limited knowledge and in- formation surrounding early symptoms of serious illness and the value of prevention. Preliminary evidence discussed in Chapter 3 suggests that these socioeconomic, cultural, and health literacy factors may be associated with higher costs in the long run, when expensive tertiary care and emergency department services become necessary.

Limited local health resources and services can also impede access to care. Grocery stores and heath services are among the many resources that are limited in low-income and remote areas. Transportation may be a ma- jor obstacle; if services are difficult to get to or far away, people may do without, or postpone the use of the service. For some individuals often only limited primary care treatment services are available conveniently. So, for example, women needing mammograms may have to travel to a facility where this can be done, which can be a deterrent to obtaining that service. Limitations on hours of availability can also reduce access. Some clinics operate only or primarily during business hours. This may create problems for many people seeking health services. In particular, low-income patients may have a harder time getting time off from work, or finding child care, in order to seek care or take a family member to get care. Health services that have weekend and evening hours could potentially help prevent the unnec- essary use of emergency departments.

Limitations on Provider Time

A major impediment to appropriate communication about health is the limitation on provider time that is often required by HMOs, public clinics, and health-care reimbursement plans. For example, most plans do not

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reimburse for time spent in instructing patients on how to manage diabetes. It is nearly impossible to deal with literacy, language, and cultural issues within the context of a 10–15-minute patient visit. Ironically, the result of poor communication and abbreviated or no patient education is higher use of emergency services, greater severity of illnesses, failure to follow instruc- tions and use medications properly, and other “errors” which ultimately result in increased health-care costs.

In this regard, Linzer and colleagues (2000) have established that time pressure is related to lower levels of physician career satisfaction, especially in the managed care setting. Federman and others (2001) have demon- strated that failure of physicians to acknowledge patient concerns, provide explanations of care, and spend sufficient time with patients may contrib- ute to patients’ decisions to discontinue care at their usual site of care. Discussing these papers in an editorial Warde (2001) states that “it seems that a physicians ability to engage the patient without distraction from other activities is an important determinant in the quality of an encounter with a patient . . . true access means being psychologically available to conduct interviews that center on the physical, social, and psychological needs of each patient.” She goes on to suggest that “through its effect on the doctor–patient relationship, time pressure may diminish the very outcomes that health plans strive to achieve: high quality of care, access, cost-effective resource utilization, and patient satisfaction” (Warde, 2001). Encounters with limited-literacy patients can only require more time to overcome these barriers.

Health Expenditures

Health expenditures are of concern to decision makers in both the public and private sectors, and particularly to private employers and small businesses. Health spending has increased as a percentage of gross domestic product (GDP) as growth in health expenditures has outpaced growth in the economy as a whole. The Department of Health and Human Services (HHS)5 projects that the increase in health expenditures will fall to about 7 percent in the 2003–2007 period, and to 6.6 percent during 2008–2011 (Heffler et al., 2002). During this period health spending will continue to

5National health expenditures and future projections are reported annually by the Office of the Actuary in the Department of Health and Human Services. It reports on total national health expenditures, including all services such as hospitalization, physician and dentist care, pharmaceuticals, nursing homes, home health, and other costs; these also cover all sources of payment such as Medicare, Medicaid, different forms of private insurance and managed care plans, and out-of-pocket payments by individuals.

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outpace the overall economy by 2.5 percent per year, resulting in growth from 13.2 percent of GDP in 2000 to 17 percent in 2011. There is no reason to believe that these increases will moderate in the near term, and policy attention from both public and private sectors will continue. This attention has led to a renewed discussion of health-care policy as a na- tional- and state-level issue that has included fundamental questions such as whether health insurance should be tied to employment, the relative roles of the public and private sectors, and whether consumers themselves should assume more responsibility for health-care costs and quality.

The most recent national estimate of expenditures for 2001 is $1.4 trillion or $5,035 per capita, based on a growth rate of 8.7 percent in 2001 (Levit et al., 2003). These expenditures are the highest in the world. The reasons for these high rates are complex. Although greater volume is often cited as the primary reason for higher costs in the United States as com- pared to other countries, it has been found that prices of services, rather than volume, are responsible for higher costs in the United States. Adminis- trative costs in the private sector are also much higher than in other coun- tries or in Medicare. While some combination of new technology and in- creased demand has led to increases in both prices and utilization, these vary across the nation. A recent study indicates that variation in expendi- tures between states is in part due to underlying demographics like age and wage rates, and in part due to the supply of hospitals and physicians (Mar- tin et al., 2002). In addition, states with higher managed care penetration have lower expenditures. This is thought to be attributable to “both lower premium rates charged by HMOs and spillover effects of competition on non HMO premiums” (Martin et al., 2002).

Preliminary evidence on the cost implications of limited health literacy (presented in Chapter 3), while not conclusive, give some idea of the mag- nitude of impact of health literacy on national medical expenditures. Ef- forts to improve health literacy, or to limit its detrimental effects, may provide an important contribution to health-care policy addressing rising health expenditures (Heffler et al., 2002; Levit et al., 2002; Martin et al., 2002).

Consumer-Directed Health Care

A major emerging issue in the health system is increased consumer involvement in health-care choices. This movement has evolved primarily from self-insured employers who have developed a series of “consumer- driven” or “consumer-directed” health plans. These plans require consum- ers to make decisions about how they want to spend their health-care dollars, including how much co-insurance and out-of-pocket expenses to budget, which providers to see, and what services are really necessary

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HEALTH SYSTEMS 183

(Edlin, 2002). Consumer-directed health care appears to have developed because of the failure of both regulation and market forces to produce satisfactory cost containment results, and a belief that providing consum- ers with incentives can produce a more efficient and responsive system. The Foundation for Accountability, with support from the Agency for Healthcare Research and Quality (AHRQ), produced in June 2002 a “how- to guide” called “Who’s in the Driver’s Seat? Increasing Consumer Involvement in Health Care” (FACCT, 2002). This guide describes 48 different strategies currently being tried, which encompass employers implementing disease management programs, purchasing coalitions teach- ing enrollees about quality, health plans improving doctor–patient com- munications, consumer organizations relying on members’ expertise to develop communication materials, and researchers studying how people acquire and use information to improve their health. More narrowly, much attention is being given to health insurance vehicles which run the gamut from flexible spending accounts, medical savings accounts and defined contribution plans to new Internal Revenue Service-approved “health re- imbursement arrangements” (Scandlen, 2003). Several new companies, such as Definity and Lumenos, have formed to market new consumer- driven vehicles (Elswick, 2003). These specific insurance products are still too new to assess their impact and effectiveness and some are skeptical that they will grow dramatically (Elswick, 2003).

In a broader sense, many in both the public and private sectors see increased consumer involvement in coverage and care decisions as a major force to improve the cost and quality issues that other approaches have not been able to achieve. If this is the case, the burden for persons with limited health literacy—who already face the challenges outlined in this report— will surely increase significantly.

Finding 6-2 Health literacy is fundamental to quality care, and relates to three of the six aims of quality improvement described in the IOM Quality Chasm Report: safety, patient-centered care, and equitable treat- ment. Self-management and health literacy have been identified by IOM as cross-cutting priorities for health-care quality and disease prevention.

Health Law and Health Literacy6

Legislatures and courts are beginning to respond to the issues raised by limited health literacy in the context of health care. Current laws require

6The committee thanks Frank McClellan, J.D., for his contributions to this section of the report. Mr. McClellan summarized and interpreted the law in relation to health literacy for the committee.

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184 HEALTH LITERACY

health-care providers to furnish translators for patients who do not speak English, and interpreters to patients who have seeing or hearing disabili- ties.7 Current laws do not address the problem of patients with limited literacy. We found only a few cases in which literacy itself was pivotal in resolving the tort8 claim or lawsuit, two of which are discussed briefly below.

Cases in which literacy is pivotal to the tort claim are likely to be more common in the near future. The identification of health literacy as a cross- cutting contributor to health services quality (IOM, 2003b) indicates a need for legislative policies supporting health literacy as a contributor to good health care. These policies would affect the development of common law, which is driven by policy considerations. In this context, these policy con- siderations are likely to be defined on the basis of what is good health care. Each state has the power to develop its own common law or statutory law, which, in the absence of a single national policy, may contribute to varia- tions between states in the recognition of health literacy as a contributor to good health care.

Two areas of health law and health care that are particularly central to health literacy are the standard of reasonable care and the informed consent process. It is around these areas that policy likely to affect common law could be developed.

The Standard of Reasonable Care

When a patient suffers an injury that was either directly caused by the health care rendered, or which could have been avoided by appropriate health care, the injured patient (or his or her family) may consult an attor- ney to determine whether the health-care provider is legally responsible for the injury. In making that assessment, the attorney will examine federal and state statutes, administrative regulations, and court decisions to determine what the legal standard is for the particular service provided. The court decisions, referred to as the common law, will in most instances include a reference to the standard of reasonable care. In most circumstances, reason- able care means care rendered in accordance with the standards of the profession. Courts seek to determine what a prudent health-care worker would do in similar circumstances on the evidence of professional stan- dards. Practice standards developed by professional groups provide part of

7Title VI of the Civil Rights Act, and its implementing regulations. Americans with Disabili- ties Act.

8A wrongful act other than a breach of contract for which relief may be obtained in the form of damages or an injunction.

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HEALTH SYSTEMS 185

this evidence; other evidence may be found in federal and state statutes and their implementing regulations, accreditation standards of professional as- sociations, and by-laws of hospitals.

The treating physician or nurse is held liable for an injury only where ordinary care in accordance with the standards of the profession would have avoided the accident, rather than as a guarantor of a good outcome. Therefore, in most instances the professions control the standards by which their members are judged. There are two important qualifications to the profession’s control of the standards. First, the provider may be found negligent if he or she has special knowledge indicating that following the ordinary standard in the particular circumstances involved will expose the patient to an unreasonable risk of harm. Second, in rare instances, a court may declare that the whole profession may be found negligent for following a practice that new information or alternatives have shown to be unduly dangerous.

The concept of reasonable care can be applied to considerations of health literacy in the context of health care. The case of Incollingo v. Ewing9 provided a court opinion reflecting both the rule that a profession (or a large percentage of it) may be found negligent, and the rule that each physician must use his or her own personal knowledge. This case involved a child who died as a result of suffering aplastic anemia due to the con- sumption of a wide-spectrum antibiotic (Chloromycetin) prescribed at first by the child’s pediatrician for a throat infection and abdominal pains, and then renewed by a second physician after a telephone request by the child’s mother.

The doctor who initially prescribed Choloromycetin sought to justify his conduct on the ground that he was aware of the risk that the drug could cause aplastic anemia and therefore made sure not to allow for a renewal of the prescription. In his view, the child first presented to him with a throat infection that he regarded as a major ailment. He argued that even the plaintiff’s expert agreed that in prescribing this antibiotic he acted in the same manner as 95 percent of the doctors in Philadelphia where he prac- ticed. The court noted that the drug’s package insert warned that the drug should not be prescribed for minor ailments, and the mother produced expert testimony at trial that the child indeed had a minor ailment when the drug was first prescribed. Consequently, the court found that the jury was allowed to find the first doctor negligent for not using his personal knowl- edge appropriately.

The doctor who renewed the prescription sought to defend his action

9444 Pa. 263, 282 A.2d 206 91971.

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on the ground that most doctors in Philadelphia would have prescribed the same drug for a minor ailment at that time, based on a belief that the drug was effective and posed a very small risk of serious harm. He acknowledged that the package insert warned against such prescriptions of the drug, but contended that the medical community often prescribes the drug because the manufacturer had minimized its risks in communications directly to the prescribing doctors. Rejecting this argument, the court emphasized that medical custom is not always controlling, reflecting the rule that a profes- sion (or a large percentage of it) may be found negligent. The health-care provider must exercise reasonable care, “giving due regard to the advanced state the profession at the time.”10

A similar view was expressed in Helling v. Carey11 (1974), in which the appellate court declared as a matter of law that a prevailing medical custom was negligent. A patient suffered blindness as a result of undiagnosed and untreated glaucoma. The patient had been under the care of the physicians for a number of years, and had never received a test of intraocular pressure. The prevailing custom of ophthalmologists was to perform routine pressure tests for early glaucoma only on patients who were over 40 years of age, because the risk of glaucoma was, in their view, too small in persons under 40 to justify routine pressure tests. The court ruled that the doctors were negligent as a matter of law, notwithstanding the evidence that they fol- lowed the custom of their specialty at the time. Noting that a low-risk, inexpensive test could have prevented a serious illness such as blindness in a long-term patient who was experiencing loss of vision, the court declared that reasonable care dictated the performance of the test.

This suggests that if future health literacy research supports the exist- ence of associations between low-risk, inexpensive approaches to limited health literacy and reduced morbidity or mortality, the rule that a profes- sion (or a large percentage of it) may be found negligent could apply to the failure to use health literacy interventions in clinical settings, including programmatic changes in health information provision. Providers could also be responsible when their knowledge indicated that a lack of patient understanding would expose the patient to an unreasonable risk of harm.

The Doctrine of Informed Consent

The doctrine of informed consent, which obligates the physician to inform the patient of the risks, benefits, and alternatives to undergoing or

10282 A.2d at 216. 1183 Wash. 2d 514, 519 P.2d 981.

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refusing to undergo the treatment recommended by the physician, has ex- tensive legal and research implications when addressing health literacy.

Informed consent in health care and research. In most cases, consent forms involve the use of structured and technical language to disclose subjects’ rights, roles, and responsibilities. They contain complex descriptions of institutional practices, financial and insurance considerations, legal con- cerns, advanced medical technologies, and potential risk/benefit consider- ations. Cumulative research over the past two decades and across three continents shows that consent forms for treatment and research are written at a level beyond the skills of most patients involved in research (Criscione et al., 2003; Freda et al., 1998; Goldstein et al., 1996; Gribble, 1999; Grossman et al., 1994; Grundner, 1980; Hammerschmidt and Keane, 1992; Hopper et al., 1995, 1998; Jubelirer, 1991; Lawson and Adamson, 1995; LoVerde et al., 1989; Mader and Playe, 1997; Mathew and McGrath, 2002; McManus and Wheatley, 2003; Meade and Byrd, 1989; Ogloff and Otto, 1991; Ordovas et al., 1999; Osuna et al., 1998; Rivera et al., 1992; Tait et al., 2003; Tarnowski et al., 1990). Examples of consent form text at different reading levels are provided in Table 6-1.

The readability of consent forms is often at a scientific level that con- tributes to information overload, poor understanding, and misinformed consent (Benson and Forman, 2002; Davis et al., 1994; Hopper et al., 1995; Meade and Howser, 1992; Philipson et al., 1995; Raich et al., 2001; Reicken and Rovich, 1982; Sugarman et al., 1998, 2002). In 2003, Paasch-Orlow et al. (2003) reported results of a cross-sectional study of 114 web sites from U.S. medical schools regarding their Institutional Review Board (IRB) read- ability standards and informed consent templates. Specific readability stan- dards were found on 61 web sites (54 percent) and were found to range from a fifth-grade reading level to a tenth-grade reading level, while other sites contained descriptive guidelines such as “simple lay language.” Results revealed that informed consent text often falls short of the institutions’ own readability standards and suggest that federal oversight is associated with better readability. Figure 6-2 shows the difference between the readability of informed consent forms and the readability required by the IRBs.

Furthermore, while patients who sign consent documents often report their understanding of the research or treatment and satisfaction with the consent process, they may not fully understand the consent given (Horng et al., 2002; Pope et al., 2003; Vohra et al., 2003; Williams et al., 2003).

As pointed out in Chapter 1 of this report, all people (not just those with low educational levels) are at risk for low health literacy. The in- formed consent process brings with it particular challenges that may further impede understanding. This is in part attributable to the inherent complex-

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ity and nature of informed consent information. But, it also relates to the multitude of psychosocial, ethical, and situational factors that may sur- round the clinical need for informed consent, such as hospitalization, emer- gency heart surgery, participation in Phase I cancer clinical trial, genetic testing, new vaccine for HIV, use of surgical placebos for Parkinson’s dis- ease, or separation of conjoined twins.

TABLE 6-1 Examples of Informed Consent Text Provided by Institutional Review Boards at U.S. Medical Schools*

Readability Level Voluntary Participation No Direct Benefits

4th Grade† “You don’t have to be in this “There is no benefit to you from research study. You can agree to being in the study. Your taking be in the study now and change part may help patients in the your mind later. Your decision future.”‡ will not affect your regular care. Your doctor’s attitude toward you will not change.”

8th Grade† “Participation in this study is “There is no direct benefit to you entirely voluntary. You have the from being in this study. right to leave the study at any However, your participation time. Leaving the study will not may help others in the future as result in any penalty or loss of a result of knowledge gained benefits to which you are from the research.” entitled.”

12th Grade§ “Your participation in this study is “There may be no direct benefit to strictly voluntary. You have the me, however, information from right to choose not to participate this study may benefit other or to withdraw your patients with similar medical participation at any point in this problems in the future.” study without prejudice to your future health care or other services to which you are otherwise entitled.”

*All the examples are taken directly from medical-school Web sites unless otherwise noted. †The readability level is based on the Flesch-Kincaid readability scale. ‡The passage was modified to present key concepts at a fourth-grade reading level. §The readability level is based on the Fry readability formula. SOURCE: Excerpted from Table 1 in Paasche-Orlow et al. (2003). Copyright © 2003 Massa- chusetts Medical Society. All rights reserved. Reprinted with permission.

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FIGURE 6-2 Difference between actual readability and target readability of in- formed consent documents. Each bar represents 1 of the 61 institutional review boards that indicated a specific grade-level target as a readability standard. SOURCE: Paasche-Orlow et al. (2003). Copyright  2003. Massachusetts Medical Society. All rights reserved.

–8 –6 –4 –2 0 2 4 6 8

Difference between Grade Levels (actual minus target)

Lower Grade Level Than Target

Higher Grade Level Than Target

A signature on a consent form is not adequate evidence that informed consent has been obtained. In providing informed consent, a research par- ticipant faces significant challenges, which are not adequately addressed through standard policy procedures (Triantafyllou et al., 2002). In many cases, patients and providers may disagree about the need for and adequacy of consent. Patients tend to see consent as necessary more frequently than providers, hold different views on whether true informed consent was ob- tained, and may be less than satisfied with the amount of information exchanged (Bray and Yentis, 2002; Cox, 2002; Gardner and Jones, 2002; King, 2001; Mathew and McGrath, 2002; McManus and Wheatley, 2003; Osuna et al., 2001; Schopp et al., 2003). These differences in views and biases in information may not be recognized by the provider or patient (Hewlett, 1996), and affect the patient’s right to self-determination12 and self-decision,13 that is, the right to make any informed decision. Appelbaum (1997) notes that in communicating with patients, clinicians and research- ers often underplay the risks associated with the randomized trials, and the benefits associated with standard care.

12Schloendorrf v. Society of New York Hospitals, 211 NY 125;105 NE 92 (1914). 13Canterbury v. Spence, 464 F 2d 772 (1972).

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190 HEALTH LITERACY

Legal precedents. While no case directly addresses health literacy, cases exist in which theories of negligence, informed consent, and literacy have been brought to bear. A case that illustrates the potential issues that must be considered when examining literacy and informed consent is Hidding v. Williams14 (1991). The patient underwent a laminectomy that resulted in complete loss of control of his bowel and bladder. Prior to surgery he signed a consent form that stated that a risk of the surgery was “loss of bodily function.” Since the patient died prior to trial his wife prosecuted his personal injury claim and offered the only testimony from the patient’s view regarding the consent process. She testified that although her husband signed the form, he had only a fifth-grade education and minimal reading skills. She read the consent form for him and did the best she could to explain it. However, she thought “loss of function of bodily organs” meant that he might not be able to get up and walk around right away after the

14578 so. 2d 1192, La. App.

“I was in my early 30s and having problems with my girl parts. I was bulging in the vaginal area and I knew this was not normal. The doctor told me that it would be an easy repair and could be done. The surgery was set up. On the night before surgery, I remember having lots of papers pushed toward me to sign. I signed them because I needed to do this. I had surgery the next day and my recovery went very well. I had a large scar on my lower abdomen. I went for my six-week follow-up visit and was asked by the nurse how I was doing since my hysterectomy. No one had ever used those words before, but I knew what they meant. I had never asked any questions. I made the assumption that all doctors knew exactly what they were doing and had better intelligence than me. I was too humiliated to reveal to the doctor and nurse that I did not know what had been done to me. Communication had broken down and failed me.”

“No one knew that I could not read well. Actually, I could read . . . but only one word at a time. By the time I got to the end of a sentence—I had no comprehension of what I had just read. I struggled to read. All that I read I would read three times. I kept books in front of me so others would not find out. I thought that if others found out, that they would think I was stupid. To check on the spelling of a word, I would call the library (that way no one could see me). There are many ways to hide poor reading from others.”

Personal story graciously provided by Toni Cordell, Adult Learner and Lit- eracy Advocate, as told to C.D. Meade, September 2003.

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surgery. She had no idea that it meant he faced a risk of loss of control of his bladder, and thus she did not include that information when she at- tempted to explain the risks he was confronting. In light of this testimony the judge, sitting without a jury, ruled that informed consent was not obtained. The court explained:

The physician is required to disclose material risks in such terms as a reasonable doctor would believe a reasonable patient would understand. In order for a reasonable patient to have awareness of a risk he should be told in lay language the nature and severity of the risk and the likelihood of its occurrence. A bland statement as to a risk of ‘loss of function of bodily organs’ when not accompanied by any estimate of its frequency does not amount to understandable communication of any specific real risk.15

The case supports the concept that a written document of a patient’s consent is evidence that an informed consent was obtained, but is not conclusive and can be rebutted by other evidence. Thus, while it is impor- tant to have documentary evidence of advising a patient of risks, benefits, and alternatives, the existence of that document does not prevent the court from considering whether the information deemed critical to making a meaningful expression of consent to the treatment was conveyed to the patient by a means that was likely to enable patient comprehension. Signed consent documents are treated in this manner in most states. Evidence that the patient could not read or comprehend the form leaves the issue of whether an informed consent was given to evidence regarding the commu- nication process, such as verbal conversations, picture displays, and videos. The same is true with respect to instructions given to the patient or the patient’s family as to monitoring physical condition, administering medica- tion, and so forth.

Finding 6-3 The readability levels of informed consent documents (for research and clinical practice) exceed the documented average reading levels of the majority of adults in the United States. This has important ethical and legal implications that have not been fully explored.

Governmental and Agency Roles

Roles of the Federal Government

Many of the federal health agencies have programs and activities for documenting and improving the health literacy of our nation. These agen-

15578 So. 2d at 1196.

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cies can influence the health-care and public health systems to develop and support integrated strategies addressing health literacy and can increase the scientific knowledge base about health literacy by fostering research and collaboration.

In addition, the federal government plays a central role in the produc- tion and dissemination of health-related information and the regulation of such information from other sources. The involvement of specific agencies such as the Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC) in these activities is described be- low. One widely known regulatory action in this regard is the Health Insurance Portability and Accountability Act of 1996. On April 14, 2003, as mandated by this act and in accordance with the Office of Civil Rights National Standards to Protect the Privacy of Personal Health Information, a notice of privacy practices was disseminated to all consumers entering the health-care system across the country (in hospitals, dental offices, pharma- cies, and other health service locations).16 The law requires that this infor- mation be “read and understood” by consumers. Printed information was distributed in a variety of formats and languages to convey how medical information may be used and disclosed including information relating to treatment, payment and health-care operations, business associates, fundraising, research, appointment reminders, treatment alternatives, ben- efits and services, and persons involved in a patient’s care. However, the committee observed that the text disseminated to convey this important information varied widely in its nature, scope, and complexity. It is very likely that the privacy documents were written above the reading level of many Americans. Until formal evaluations are conducted, it remains un- known how well consumers fully understand the federal regulations that must be “read and understood” before care is provided.

We summarize here the activities of those agencies with important roles relating to health literacy in the health system context. This is not an exhaustive list of all federal agencies with related work, but is intended to highlight those that either have ongoing activity in this area or show par- ticular promise to influence the issue. Chapters 4 and 5 highlight some of the health literacy-related activities of federal agencies in the contexts of the educational system and culture and society, including those related to lan- guage issues and interpretation in health care.

Office of the Secretary, Office of Disease Prevention and Health Promotion As the lead agency for the health literacy objective of Healthy People 2010

16Health Insurance Portability and Accountability Act of 1996. http://www.hhs.gov/ocr/ hipaa/.

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(HHS, 2000), the Office of Disease Prevention and Health Promotion (ODPHP) has been actively working to raise awareness about health lit- eracy, to identify and coordinate health literacy activities across HHS, to convene HHS agencies to work collaboratively on health literacy, and to identify external partners. In 2000, ODPHP established a partnership with the National Center for Education Statistics of the U.S. Department of Education to develop the health literacy measures that are included in the 2003 National Assessment of Adult Literacy. These data represent the first national measures on health literacy, and will be used to assess the Healthy People 2010 objective. ODPHP has also collaborated with outside organi- zations on health literacy by including health literacy in its Memoranda of Understanding with several organizations, including the American Medical Association (AMA) and the Academy of General Dentistry.

Centers for Medicare & Medicaid Services (CMS) Individuals considered at highest risk for limited education and low health literacy are the elderly and those with low incomes. Many are enrolled in the Medicare and Med- icaid programs administered by the Centers for Medicare & Medicaid Ser- vices (CMS). Medicare is a federally run health insurance plan covering nearly 40 million people in the United States who are 65 years of age and older, disabled, or have permanent kidney failure. Medicaid provides health assistance to certain individuals and families with low incomes or resources, and, in contrast to Medicare, is a state-administered program. See below for further information on Medicaid. Both Medicare and Medicaid are complicated and confusing programs, with health literacy issues in enroll- ment, making choices, patient rights, and terminology (Hudman, 2003; Scala, 2002).

Because CMS runs the Medicare program, it is directly responsible for communication with people covered under Medicare about health insur- ance coverage, their rights and protections in Medicare, and their health plan options. Communication about the Medicaid program is a function of each state, and CMS works with the states to ensure that people in Medic- aid receive the information they need (see below for further information on Medicaid). In both cases, CMS works to ensure that these communications are accurate, reliable, relevant, understandable, and, to the extent possible, culturally appropriate. One way it does so is through the provision of agency-wide communication guidelines and training materials such as “Writing and Designing Print Materials for Beneficiaries: A Guide for State Medicaid Agencies.” CMS also uses consumer research and training, con- sultation with literacy experts, and communication guidelines to develop materials for consumers that are intended to be easy to navigate and under- stand through format, design, and wording modifications. Consumer re- search and testing includes target audience members with lower education

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194 HEALTH LITERACY

levels, from a variety of ethnic, racial, income, and health experience back- grounds.

The Food and Drug Administration The FDA regulates and provides in- formation about drugs, biological products, medical and radiological de- vices, the food supply, and cosmetics. Three general areas of FDA activity related to health literacy are advertising, outreach, and labeling.

• Advertising. Advertising for prescription drugs is regulated by the Code of Federal Regulations (21 CFR 202) and is enforced by the FDA. Criteria indicate that both print and broadcast advertisements must not be misleading, must provide balanced information about risks and benefits, must state the major risks, and, for print advertisements, must contain a brief summary statement of effectiveness. Broadcast advertisements also are required to include “adequate provision” for methods to obtain more de- tailed information, such as through a print ad, a toll-free telephone number, or by asking a health-care provider.

• Outreach. Outreach to consumers and patients is a central activity for the FDA. The FDA develops public service campaigns and announce- ments, maintains web information for consumers, and carries out educa- tional programs on specific topics. Challenges to successful consumer out- reach at the FDA include: getting information to a wide variety of consumers with different needs, abilities, and desires; encouraging consumers to use the information; simplifying information without losing meaning or be- coming too lengthy; and ensuring balance between risks and benefits (Lech- ter, 2002).

• Labeling. The FDA approves and has legal jurisdiction over the content of labels for prescription and over-the-counter medications as well as biologics and medical devices. Aspects of medication labeling overseen by the FDA include medication guides, patient package inserts, and the standardized over-the-counter Drug Facts format. The FDA also performs research on label comprehension and the actual use of labels by consumers, monitors the prescription information provided to consumers by the pri- vate sector, carries out consumer outreach, and monitors prescription drug advertising.

An FDA regulation requires that over-the-counter medication labels be written: “. . . in such terms as to render them likely to be read and under- stood by the ordinary individual, including individuals of low comprehen- sion, under customary conditions of purchase and use.”17 The sponsor or

1721 CFR 330.10(a)(4)(v).

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18The committee thanks Patrick Weld and K. Visnawath, Ph.D., of the National Cancer Institute for their contributions to this section of the report. Mr. Weld and Dr. Viswanath performed this search and analysis of the CRISP database. An expanded description of the methods of their work can be found in Appendix A.

manufacturer of a medication is responsible for producing labels that com- ply with this requirement, and may conduct label comprehension studies that require the participants to apply the label information in hypothetical situations. The FDA reviews the results of these studies in order to strengthen the label, and to determine whether the medication can safely and effectively be used without professional guidance. Participants in the studies include individuals with “low comprehension” as required by the regulation mentioned above. Low comprehension is typically defined as having an eighth-grade reading level or below, and the Rapid Estimate of Adult Literacy in Medicine (REALM) is frequently used to make this deter- mination.

The Centers for Disease Control and Prevention As the lead public health agency of the United States, the CDC has a central role in successfully communicating information on health and illness to all members of the public. The CDC identifies “Providing credible information to enhance health decisions” (CDC, 2003) as one of the central goals of its mission. Related to health literacy, the CDC’s focus has encompassed efforts around plain language including training, testing and pre-testing materials, surveys, and the provision of health information to TV shows, networks, writers, and producers. The CDC has addressed issues of culture in several of its programs. For example, the National Institute for Occupational Safety and Health added a Spanish-language section to its web site in 2001, and the National Immunization Program developed educational material for Ameri- can Indians and Native Alaskans in 2003. Currently, CDC is redesigning its web site based on a CDC web evaluation completed in 2002. The evalua- tion showed that consumers looking for basic health information regarding disease and disease prevention are the largest segment of visitors to the CDC web site.

The National Institutes of Health The National Institutes of Health (NIH) play the crucial role of determining federal funding for health literacy re- search, and thus in large part set the research agenda on the topic in the United States. Figure 6-3 shows NIH funding of health literacy over the past 6 years.18 These data were derived from a search of the NIH CRISP database from 1993 to 2002 using the following operands: “health lit- eracy,” “health and literacy,” “health and readability,” and “literacy and readability.” The grants retrieved were examined for relevance to the field

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196 HEALTH LITERACY

of health literacy. A total of 906 grants for a 10-year period were identified, but 229 of the grants from 1993–1996 contain missing financial data. The figure shows the funding totals from the 565 grants that remained after eliminating grants that were not funded, and grants for which data were missing.

“Low-literacy” components were included in studies in cancer, child- hood development and reading, arthritis, asthma, diabetes, HIV, mental health, Alzheimer’s, health disparities, and studies in Spanish-speaking populations. In addition, “low literacy” was included in seven Requests for Applications since 2000, in studies such as Environmental Justice (spon- sored by the National Institute of Environmental Health Sciences), Adult and Family Literacy (sponsored by the National Institute of Child Health and Human Development), Native American Research Centers for Health, oral health disparities, diet and physical activity assessment, and cancer communications.

Although the increase in funding over the past decade clearly represents a positive trend, the amount funded by NIH for programs and projects that examine health literacy is a small segment of the NIH budget. This amount, which is equivalent to $20 to $50 million per year, has consistently been less than half of 1 percent of the annual grant funding by NIH.

The Health Resources and Services Administration The Health Resources and Services Administration (HRSA) of HHS provides both service and

FIGURE 6-3 National Institutes of Health grant funding over the 1997–2002 period.

50

40

30

20

10

0

D ol

la rs

in M

ill io

ns

1997 1998 1999 2000 2001 2002

Year

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HEALTH SYSTEMS 197

educational programs intended to improve access to health care, the quality of health care, and health outcomes. HRSA’s programs serve millions of diverse people from multiple racial and ethnic groups with differing educa- tional levels who are frequently of low-income socioeconomic status. Edu- cational programs provide training in interpretation, cultural competence, and communication for health-care providers, while HRSA’s service pro- grams provide funding and direction for health-care delivery sites across the nation. Health-care delivery sites focused on various populations and types of care are administered by the various bureaus of HRSA, including the HIV/AIDS Bureau, the Bureau of Primary Health Care, and the Maternal and Child Health Bureau. The service programs utilize community health workers (also known as promotoras, outreach workers, or lay health work- ers) who are lay members of the community and work in association with the local health-care system, providing health education, interpreting health information, and assisting in obtaining access to services.

Agency for Healthcare Research and Quality The AHRQ is the part of HHS that sponsors, carries out, and disseminates research on health-care quality, medical errors and patient safety, health-care cost, and health dis- parities. AHRQ recently sponsored an evidence-based review of health literacy research to answer the following questions:

• What is the relationship between literacy and health outcomes, use of health services, and resources?

• What is the relationship between health literacy and racial dispari- ties in health and health care?

• What are effective interventions to reduce the impact of health literacy?

• What are effective literacy-related interventions for reducing racial disparities in health and health care?

Although the results of this project were not available at the time of publication of this report, AHRQ worked with the IOM to provide preliminary information that was valuable in informing the work of the Committee.

The Department of Veterans Affairs The Department of Veterans Affairs (VA) is responsible for providing federal benefits, including health care, to the nation’s veterans and their dependents. The VA’s National Center for Health Promotion and Disease Prevention (NCP) uses patient education and health promotion techniques in order to increase quality of life and reduce health-care costs. The VA patient population is a vast heterogeneous group—6 million “enrolled” veterans, and over 25 million “eligible” vets.

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198 HEALTH LITERACY

They span all races, numerous cultures, all levels of education, all socioeco- nomic strata, and both genders, with approximately 85 percent males. The VA patient population also shows a wide age range of 18 years and up, with two basic spikes—20- to 30-year-old veterans with short military stints, and those over 50 years, representing retired military. The heteroge- neity of the population points to the need for awareness of differences in attitudes, perceptions, and level of technological adeptness. Disabilities in the veteran population (including blindness, deafness, and mental disor- ders) also present barriers to access and communication. The NCP uses various techniques to ensure that educational and health promotional ma- terials respond to all of these issues and needs.

Roles of State Governments

State governments have also identified health literacy as a critical issue. In 2002, the Council of State Governments undertook a national research project with the goals of (1) gathering data from the latest findings on health literacy, (2) determining what states are doing to make it easier for someone with low health literacy to navigate the health-care system, and (3) preparing a report providing information and tools necessary for state leaders to determine what appropriate action they might take. They sent a National Survey on Health Literacy Initiatives to state governor’s offices, departments of heath, Medicaid and State Children’s Health Insurance Program offices, departments of education, and offices of heath literacy. This resulted in a 2002 publication, The State Officials Guide to Health Literacy (Matthews and Sewell, 2002).

The most important finding from this survey is that health literacy is an emerging issue that few states have addressed specifically and directly. They report that while no state is addressing health literacy in a comprehensive, multifaceted manner, individual agencies in a handful of states—including Georgia, Illinois, Massachusetts, and Virginia—have established programs, hired staff, or created task forces to respond to low health literacy and its effects on health-care delivery. A number of states are involved in activities that make it easier for someone with low health literacy to navigate public assistance programs—such as simplifying enrollment materials and proce- dures—or to increase health literacy by setting health education standards in both K-12 and adult literacy classes. Examples of some of these efforts are discussed further below in the section on approaches to health literacy.

As discussed briefly above, Medicaid, the health-care assistance pro- gram for low-income individuals and families, is a state-run program. Each state sets its own guidelines for eligibility and services for Medicaid, under the general guidance of CMS. As reviewed in Chapter 3, individuals with lower income or resources are more likely than those with higher incomes

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or resources to have limited literacy skills. Those enrolled in Medicaid, therefore, may be more likely to encounter barriers to care related to health literacy. Box 6-2 discusses the differences across states in dealing with health literacy and related issues in contracts with managed care providers of health care to those enrolled in Medicaid.

Roles of Regulatory Agencies

There are two main private organizations in the United States for ac- creditation and review of health-care facilities and providers: the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the National Committee for Quality Assurance (NCQA).

Joint Commission on Accreditation of Healthcare Organizations The pri- vate, nonprofit JCAHO is the oldest and largest health accreditation orga- nization in the United States, providing accreditation to over 17,000 orga- nizations including hospitals, health-care networks, home care agencies, and nursing homes. Its mission is “to continuously improve the safety and quality of care provided to the public through the provision of health care accreditation and related services that support improvement in health care organizations” (JCAHO, 2003). JCAHO approaches health literacy through its standards on patients’ rights and on patient and family education and responsibilities. These standards include assessing patient and family in- volvement in care and care decisions, the informed consent process, and hospital patient education tailored to patients’ assessed needs, abilities, learning preferences, and readiness to learn. Compliance with these stan- dards is assessed through document review, staff interviews, and review of patient complaints. However, it is not clear how effective these standards are in improving organizational performance regarding health literacy is- sues, and significant changes in this process are planned for 2004.

National Committee for Quality Assurance NCQA is a private, not-for- profit organization dedicated to improving health-care quality, best known for its work in assessing and reporting on the quality of the nation’s man- aged care plans through their accreditation and performance programs. NCQA identifies health literacy as a critical step in ensuring patient partici- pation in their health care. Testimony to the Committee from NCQA indi- cates that thus far it has been unable to create a valid and reliable measure that is feasible to apply at either the health plan or provider level. Such a measure is critical in trying to hold health-care providers and insurers accountable for both initial health literacy and improvement in health lit- eracy (personal communication, L. Gregory Pawlson, M.D., M.P.H., NCQA, June 13, 2003). Regardless, there are a few provisions related to

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200 HEALTH LITERACY

health literacy issues that are currently part of the NCQA standards for managed care organizations, such as:

• Quality Improvement Standard 4, which determines whether the organization assesses the cultural, ethnic, racial, and linguistic needs of its members and adjusts the availability of practitioners within its network, if necessary.

• Patient Rights and Responsibilities 4, which assesses whether the organization provides translation services within its member services tele- phone function based on the linguistic needs of its members.

In addition, there is an indirect assessment of clinical function in the Con- sumer Assessment of Health Plan Survey. This survey includes a query

BOX 6-2 State Medicaid Managed Care Contracts

Information from the Center for Health Services Research and Policy’s database on Medicaid managed care contracts (Rosenbaum et al., 2001) indicates that guidelines and requirements for Medicaid managed care providers vary across the states. Language in medicaid managed care contracts, valid as of 2001, shows that although a number of states’ contracts do address some literacy- and lan- guage-related issues, there are no specific requirements related to health literacy in any state, and many states do not address these issues at all or do so inconsis- tently. Among the 42 states with risk contracts that are captured in the Medicaid Managed Care database, 33 states and the District of Columbia included in their Medicaid managed care contracts some type of requirement pertaining to the provision of easily understood information. There is a great deal of variability across the states in how this is defined, and the method of determining if the requirement is being met. Notably, in most states, the requirement refers to the understanding of written material only. An exception is California, which requires that both verbal and writ- ten information be provided in a manner that can be easily understood. In some cases, the Medicaid managed care contract includes general language about patient comprehension such as the statement in the Massachusetts Medic- aid Contract that requires that “written information…[be provided]…in a format and manner that is easily readable, comprehensible to its intended audience…” (Ros- enbaum et al., 2001). Frequently, states indicate that written information must be readable at a specific reading grade level (see Chapter 2 for a discussion of read- ing grade levels). The reading grade level indicated varies significantly across states, ranging from as high as grade 8 in Montana and North Dakota, to grade 4 in a number of states, to a less-specific “suitable reading comprehension level” in Maryland. Still other states require that “plain language” be used. Overall, a sixth-

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HEALTH SYSTEMS 201

which asks whether the member looked for any information about how a health plan works in written materials or on the Internet, and asks how much of a problem, if any, it was to find or understand this information.

OPPORTUNITIES IN HEALTH SYSTEMS

The understanding that no one size fits all is fundamental to the under- standing of health literacy. There is not a simple solution to a complex problem. Determinants and approaches for health literacy are complex, dynamic, and require unique know-how, strategic thinking, and under- standing of the audience. While we have stressed the importance of contri- butions of three contexts (the educational system, culture and society, and the health system) for improving health literacy, in Finding 2-1 we highlight

grade reading level is the most frequently cited requirement among the states that mention a reading level. A related issue is that some of the information provided to patients must be provid- ed “as written” in federal law, and Medicaid managed contracts may specifically exclude such language from requirements to be easily understood. For example, in Texas, patient information about advance directives is excluded from its general readability requirement since certain language is required by federal law. Methods to determine readability level or whether information is easily understood also vary across states. Some states name specific programs, indices, or tests that must be used to determine reading grade level; these include methods such as the Fry Readability Index, Flesch Scale Analysis, or the McLaughlin Simplified Mea- sure of Gobbledygook Index. Other states’ contracts simply state the desired read- ing grade level. Some states require that the managed care organization itself determine if its patient information meets the requirements, while in other states this task is reserved for the state or its designee. Clearly, much of this language such as that referring to the intended audience implies that attention should be given to individuals who do not speak English or who speak English as a second language, but less frequently is this explicitly stat- ed. A few states do, however, require that information be provided in the other languages when the minority-language group makes up greater than 10 percent of the population. However, contracts more frequently include provisions for transla- tion services and cultural competence. The Medicaid managed care contracts of 12 states do not include a requirement for services to be provided to persons whose primary language is not English. Although 25 states include a requirement that Medicaid managed care providers must insure cultural competence, only 10 of these states explicitly define what is meant by cultural competence.

NOTE: The information presented in this section was obtained from Rosenbaum et al. (2001).

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19The committee thanks Terry Davis, Ph.D.; Julie Gazmararian, M.P.H., Ph.D.; and Estela Marin, M.A., for their contributions to this section of the report. Drs. Davis and Gazmararian and Ms. Marin designed, carried out, and analyzed the survey. An expanded description of the methods of their work can be found in Appendix A.

that the health-care system “carries significant opportunity and responsibil- ity to improve health literacy.” This section explores options for how the health-care system can approach this responsibility to limit the negative impact that limited health literacy has on health care and health outcomes.

The strategies discussed in this section are based on current knowledge of interventions for limited literate individuals in health-care settings and on the small but growing evidence about how health literacy might be affected by various interventions. There are a few examples of interventions specifically designed to incorporate health literacy into health systems, and some information is available from the literature regarding interventions in other related fields such as health communication and health education. However, scientific investigation of interventions to minimize the impact of limited health literacy and promote the development of health literacy skills in the context of the health-care system is in its infancy. Conclusions about the success of health literacy programs based on these areas should be made cautiously. Research to evaluate the efficacy of these interventions is needed, and the committee’s discussions represent the present consensus of experts in the field.

Overview of Current Efforts

There are limited systematic approaches to health literacy and some of the organizations addressing health literacy are not based in academic insti- tutions. It is important to be aware of approaches not yet evaluated or published in the peer-reviewed literature. Therefore, the committee com- missioned an overview of approaches to health literacy currently being used in the United States that have not appeared in the peer-reviewed litera- ture.19

The commissioned authors conducted a survey of organizations that “could make a difference” with health literacy. The types of organizations were identified first, and then the individuals most likely to be aware of health literacy issues and activities in that organization were contacted. The survey was a 5-minute, 15-question, web-based survey based on a previous survey to assess health literacy activities at the state level (Matthews and Sewell, 2002).

Information collected included: whether health literacy is considered in program development and service activities; the degree to which organiza-

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HEALTH SYSTEMS 203

tions follow health literacy principles in their programs; target audience(s) for activities; whether organizations pilot test materials for comprehension or cultural competence; evaluation of materials; which activities people associate with health literacy and lessons learned. Of the 101 individuals e- mailed, completed surveys were received from 95 individuals from a variety of government agencies, public and private interest groups, as well as re- lated business groups.

Eighty-one percent of respondents indicated that they consider health literacy in their program development and service activities. Almost all of the respondents associated health literacy with “comprehension” (94 per- cent) or “clear language” (92 percent). The majority associated health lit- eracy with “cultural competence” (80 percent), “no jargon” (72 percent), or “readability testing” (71 percent) and “self-management” (67 percent). In addition to the pre-coded categories, respondents had the opportunity to provide other areas they associated health literacy with. A few other topics identified included issues of autonomy, empowerment, decision-making; patient safety and error reduction; numeracy and computation; provider responsibility for patient understanding; and quality of care. Table 6-2

TABLE 6-2 Frequency of Doing Health Literacy-Related Activities

Don’t No Regularly Sometimes Do not do know response

Simplify language and check readability 77% 18% 2% 0 3%

Reformat materials to make them more user-friendly 74% 19% 3% 0 4%

Confirm patient/client understanding 50% 25% 17% 3% 5%

Train agency, staff, or health-care providers about health literacy 46% 32% 14% 2% 6%

Use audiovisual aids 44% 36% 14% 1% 5% Provide materials in

multiple languages 43% 30% 18% 3% 6% Use pictographs,

cartoons, etc. to instruct and inform 39% 40% 19% 0 3%

Test for reading levels in clients 25% 20 (21%) 42 (44%) 5% 4%

Use interactive computer or kiosk 16% 25 (26%) 45 (47%) 7% 3%

NOTE: Respondents could select more than one activity.

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204 HEALTH LITERACY

summarizes the type of health literacy activities that respondents reported they or their organization were involved in. Almost 95 percent of respon- dents indicated that they simplified language and checked readability, and 93 percent indicated that they reformatted materials to make them more user-friendly either regularly or sometimes. Minority (e.g., Hispanic, Afri- can American, etc.) and low-income populations were the primary target group for these health literacy activities.

It is important to view the information gained from this survey with caution. The survey was sent to a limited number of organizations and individuals. The respondents are not generally representative of their re- spective organizations. Some of the nonrespondents may have wished to avoid confusion between personal opinion and institutional goals and policy, avoiding the possibility that their response would be interpreted as an institutional statement of policy rather than a personal view.

Approaches to Health Literacy in the Health System

Given the newness of the field, it is not surprising that little empirical work exists at this time. Much more needs to be done to provide solid guidance to all stakeholders for the most effective interventions in a variety of settings. However, as the survey above indicates, many different ap- proaches that show promise are currently being tried; such innovations need to be encouraged and evaluated. In this section, we review different categories of approaches, look at some of the studies that have evaluated such approaches, consider what is already known about that approach from other fields, and showcase a number of promising efforts that are examples of the kind of work being done in this field.

For heuristic purposes, we have structured the following discussion around six categories of interventions under which most efforts appear to fall. These categories are as follows:

• Provision of Simplified/More Attractive Written Materials • Technology-Based Communication Techniques • Personal Communication and Education • Combined Approaches • Tailored Approaches • Partnerships

In addition, it is important to note that training of educators and providers is one of the most important areas of current activity in the health literacy field. Because training cuts across nearly all of the intervention

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HEALTH SYSTEMS 205

categories above, we have chosen not to break it out as a separate area, but will mention particularly notable efforts in this area where appropriate.

Table 6-3 summarizes results from a sample of studies that have exam- ined interventions taking place in, or sponsored by, health-care organiza- tions. They are organized into the categories listed above, although we acknowledge that there is necessarily some overlap among categories with some types of interventions. These studies were gleaned from a review of the database on health literacy performed by Michael Pignone and col- leagues as a commissioned project for AHRQ,20 as well as from recently published abstracts and testimony. This selection of studies was chosen to represent an array of various types of interventions in different populations and is not intended to be comprehensive. Studies included here did not have to measure the literacy level of participants. Overall, the studies displayed in Table 6-3 reflect the early state of the field. Pignone and colleagues evaluated the strength of the available evidence for health literacy interven- tions as part of the above-mentioned project for AHRQ (Pignone, 2003). The four criteria used to determine reliability were (1) the study was ran- domized, (2) the study design minimized confounding, (3) literacy was measured, and (4) the result of the intervention was reported by literacy level.

Five of the studies in Table 6-3 have been identified by Pignone (2003) as the most methodologically reliable of those that have been published (Davis et al., 1998b; Meade et al., 1994; Michielutte et al., 1992; Murphy et al., 2000; Wydra, 2001). Wydra and colleagues (2001) found that their interactive videodisc intervention increased reported self-care ability among cancer patients, but that the literacy level of the patients had no effect on this increase. Meade and colleagues (1994) examined the effectiveness of conveying information about colon cancer via videotape versus a printed booklet. Compared to controls, participants receiving any information dem- onstrated increased knowledge, but the difference between the two modes of communication was not significant. Davis and colleagues (1998b) found that those with the lowest literacy levels, after receiving a simplified and more appealing brochure, did not show a similar increase in comprehension similar to those with higher literacy skills. In contrast, Michielutte and colleagues (1992) also provided two different brochures—one with text and one illustrated—and found that even while two brochures had no influence on comprehension in the total research sample, those in the low- est literacy levels showed increased comprehension with the illustrated for- mat. It is possible that a larger sample would show a different effect.

20The committee would like to thank AHRQ for its assistance with this segment of the report.

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206 HEALTH LITERACY

TABLE 6-3 Samples of Published Studies of Interventions in Health-Care Settings

Citation Setting Study Design Population

Provision of Simplified/More Attractive Written Materials

Davis et al., Private and Nonrandomized n = 183 1998c university trial 53 patients with cancer or

oncology another medical clinics, and a condition and 130 low-income apparently healthy housing participants complex

Davis et al., Three pediatric Randomized n = 610 1998b care facilities controlled trial Parents bringing children

in Louisiana to pediatric care facility

Eaton and Outpatient clinic Randomized n = 108 Holloway, at Veterans controlled trial Outpatients who could 1980 Administration read English, see normal

hospital in size type, and were not Minneapolis, receiving warfarin MN therapy

Hussey, 1994 Geriatric Controlled trial n = 80 outpatient (nonrandomized) Patients of clinic 65 years clinic in a or older with at least county one chronic health hospital in the problem, and either of southwestern low socioeconomic status U.S. or indigent

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Continued

Intervention Outcome

Simplified informed consent form Participants preferred simplified form over the versus standard form. SWOG form, and 97% thought the simplified 69 participants given Standard form was easier to read than the SWOG form Southwestern Oncology Group (p < 0.0001). However, there was no (SWOG) consent form (16th grade significant difference in degree of level) and 114 participants given understanding of the two forms. simplified form (7th grade level) developed for study.

Polio vaccine information brochures: Overall, readers of LSU brochure showed 304 parents received simplified significantly higher comprehension (65% vs. LSU version, 306 received CDC 60%, p < 0.01); however, comprehension for version most items did not achieve clinical

significance and parents in the two lowest reading levels did not demonstrate increased comprehension with the LSU brochure. LSU brochure was preferred over CDC version.

Patient drug information guide Comprehension was greater for 5th-grade-level about warfarin written at either information compared to 10th-grade-level 5th- or 10th-grade reading levels. information (p < 0.001), and for patients

with a higher reading ability compared to those with a lower reading ability (p < 0.001). Reading ability explained 24% of variance and grade level of materials explained 8% of variance. Participants’ perception of level of difficulty, understandability, and clarity of the material was more favorable for the group receiving the 5th-grade material as compared with those receiving the 10th-grade material.

Color-coded method to increase Significant increase in knowledge in both medication compliance. Group 1 Groups 1 and 2 (p < 0.001), with no received verbal teaching about difference between the groups in knowledge medications only; Group 2 increase. Significant increase in compliance in received verbal teaching and both Groups 1 and 2 (p = 0.007), with a color-coded medication schedule. greater increase in compliance for Group 2

(color-coded schedule) among those with low compliance scores at baseline.

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208 HEALTH LITERACY

Jacobson et al., Ambulatory Randomized n = 433 1999 clinic at Grady controlled trial Primary care patients that

Memorial had not previously been Hospital, vaccinated, and had one Atlanta, GA of the following:

diabetes, heart failure, other chronic illness, 65 years or older

Michielutte A private family Randomized trial n = 217 et al., 1992 practice and Women age 18 or older

three public Women who reported no health clinics ability to read or who —OB/GYN, reported “serious illness” family were excluded planning, and sexually transmitted diseases

Powell et al., Pediatric clinic at Prospective cohort n = 66 families 2000 Northwestern Parents of children 6 years

University or younger who obtained Medical primary care from the Center, clinic Chicago, IL

Technology-Based Communication Techniques

Kim et al., Urology clinics Uncontrolled trial n = 30 2001 in two VA 100% male

hospitals in Chicago

Meade et al., Cancer clinic Randomized trial n = 1100 1994

TABLE 6-3 Continued

Citation Setting Study Design Population

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HEALTH SYSTEMS 209

Continued

Low-literacy (below 5th-grade) Intervention group significantly more likely handout to increase patient– than control group (p < 0.001 for all physician dialogue about variables) to discuss vaccine with clinician, to pneumococcal vaccination and receive vaccine, to show brochure to increases rates of immunization. clinician, and for the clinician to recommend Intervention group received vaccine. When adjusted for race, sex, age, handout encouraging patients to education, health status, insurance status, “ask your doctor about the clinician training, and vaccine indication, pneumonia shot” and control intervention group significantly more likely group received a low-literacy than control group (p < 0.001 for all handout about nutrition. variables) to discuss vaccine with clinician

and to receive vaccine.

Cervical cancer information No difference overall in comprehension with the brochures: 112 women received two brochures. When results were analyzed illustrated brochure, 105 received by reading level, the illustrated brochure was nonillustrated version. better comprehended by lower literacy

patients.

Injury prevention information No significant differences in caretaker recall of provided by pictorial anticipatory injury prevention information assessed by guidance (PAG) sheet requiring telephone 2–4 weeks later. limited reading skills or TIPP (The Injury Prevention Program).

Evaluate the knowledge, satisfaction Satisfaction with information and likelihood of level, and treatment preferences following treatment preference not of men newly diagnosed with significantly different by literacy or prostate cancer after intervention educational background. of CD-ROM about prostate cancer.

Colon cancer information presented Participants receiving any intervention showed in printed and videotaped increased knowledge compared with controls formats. Subjects received either a (booklet = 23% and videotape = 26%, no booklet, viewed a videotape, or intervention = 3%). received no intervention.

Intervention Outcome

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210 HEALTH LITERACY

Murphy et al., Sleep clinic at Controlled trial n = 192 (20 of which were 2000 Louisiana State (nonrandomized) caregivers)

University Patients at sleep clinic 18 Health Sciences years or older Center If younger than 18,

caregiver participated

Pepe and Urban health Uncontrolled n = 20 Chodzko-Zajko, department in trial Low-income, inner-city 1997 the Midwest adults aged 60–80

Wydra, 2001 Four Randomized trial 86 intervention patients, comprehensive 88 controls cancer centers Patients over age 18 who

were receiving outpatient cancer treatment

Those with less than 5th- grade reading level or brain or visual dysfunction were excluded

Personal Communication and Education

Mulrow et al., Diabetes clinic in Randomized trial n = 120 1987 London Patients with diabetes who

were overweight and not taking insulin

Patients with a history of diabetic ketoacidosis, diabetes onset prior to age 29, or over the age of 70 where excluded.

Paasche-Orlow, Two urban Uncontrolled n = 80 2003 medical Adults hospitalized for

centers asthma exacerbation

TABLE 6-3 Continued

Citation Setting Study Design Population

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HEALTH SYSTEMS 211

Continued

Information about sleep apnea from Short-term knowledge about sleep apnea was an instructional videotape or a less accurate for those with reading levels less simple brochure. than 8th grade than for those with reading

levels at or above 9th grade. Video intervention significantly improved only two areas of knowledge for readers below grade 8 (p < 0.05).

Cholesterol information videotape Increase in cholesterol knowledge score from shown on follow-up visit. baseline (62%) to two-week follow-up after

videotape (77%). 6 week follow-up scores at 72%.

Change in time in cholesterol knowledge was not significantly different between reading groups.

Interactive videodisc program Intervention patients reported greater self-care designed to improve self-care with ability after the intervention (p < 0.0001). respect to fatigue symptoms for Literacy level did not affect the amount of patients with cancer. self-care ability gained (p = 0.31).

Education program for patients with No statistically significant differences in change non-insulin-dependent diabetes to in HbA1C levels within or between groups at improve and sustain glucose and either 7 or 11 months. weight control. Subjects were Differences in weight change were significant assigned to (1) monthly group (p < 0.05) at 7 months but no change at 11 sessions with videotapes for months. diabetic persons with low literacy No significant change in knowledge score with skills; (2) monthly group sessions intervention. without videotapes; or (3) no monthly sessions after first introductory section like Group 2.

One-on-one oral and written After instruction, about 1 in 3 high-risk adults intervention at discharge covering required additional instruction about medication schedule and metered medication regimen. Higher acute care dose inhaler technique utilization, not low health literacy, predicted

the need for additional instruction.

Intervention Outcome

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212 HEALTH LITERACY

Rothman et al., University-based Randomized trial n = 206 2003 general Patients with diabetes and

internal poor glucose control medicine practice

Schillinger Two primary Uncontrolled n = 74 et al., 2003b care clinics in trial Patients with type 2–

San Francisco diabetes mellitus

Combined Approaches

Davis et al., Public hospital in Randomized n = 445 1998a Shreveport, LA controlled trial Women 40 years old or

over, attending ambulatory or eye clinic, and no mammogram in the past year

Tailored Approaches

Hayes, 1998 Emergency Randomized trial n = 60 departments, Elderly emergency room Midwestern patients rural area

TABLE 6-3 Continued

Citation Setting Study Design Population

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HEALTH SYSTEMS 213

Comprehensive disease management Literacy levels predicted improvement in intervention. glucose control among a control group with

usual care, but not among the intervention group in the disease management program.

A measure of the extent to which Higher health literacy and physician application physicians assess patient recall of interactive communication strategy were and comprehension in a public associated with good glycemic control (p < hospital setting. 0.01).

3 different interventions to increase At 6 months after intervention, Group 3 mammography usage. Group 1: showed significant increase (p = 0.05) in personal recommendation from mammography utilization as compared to one of the investigators. Group 2: Groups 1 or 2. This increase was no longer recommendation and easy-to-read significant at 2 years. In a multivariate National Cancer Institute analysis with age, race, literacy and brochure. Group 3: mammography knowledge at baseline, the recommendation, brochure, and only significant predictor of mammography 12-minute interactive educational use at 6 months was the Group 3 and motivational program, intervention. including video based on focus groups from the target population.

Comparison of the level of reading Intervention group did better on Knowledge of knowledge from either preprinted Medication Subtest (p = 0.05). discharge instructions (control) or individualized computer generated discharge instructions (intervention). Contacted by telephone for follow-up interview.

Intervention Outcome

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214 HEALTH LITERACY

Provision of Simplified/More Attractive Written Materials

Most of the approaches to improving health literacy that the committee has encountered involve producing patient information materials that are written with simplified language, have improved format (for example, more white space and friendlier layout), or use pictograms or other graphic de- vices (see information from survey above). It should be recognized that although creating patient information at readability levels that match pa- tient and family reading levels may achieve limited positive patient out- comes, it may not achieve improved comprehension in all situations. For example, while simplification of informed consent information resulted in less intimidation (Davis et al., 1998c) and lower consent anxiety and higher satisfaction (Coyne et al., 2003), it did not improve patient comprehension. An example of an effort in this category is a project of the Geriatrics Section at the University of California–San Francisco that is seeking to increase the accessibility of advance directives to individuals with limited literacy skills. An advance directive form has been developed that incorporates culturally appropriate text-enhancing graphics appropriate for individuals with lim- ited literacy skills. The form, available in both Spanish and English, not only describes what an advance directive is, but also walks patients through the process of filling out the form. It is written at a fifth-grade reading level and is currently being pilot tested and compared to other standard advance directive forms.

Graphics and other visual devices (also referred to as pictograms) are often used to replace or supplement text in health information communica- tions. Pharmacies or patient educators may use pictograms as part of pa- tient education handouts, or as stickers to be placed on prescription medi- cation packaging. These types of uses are not considered part of the official packaging, and thus are not regulated by the FDA. Concerns have been expressed that some of the pictograms currently in use do not accurately convey the intended information (Rother et al., 2002). They may be open to interpretation, and interpretation may vary by an individual’s background and experiences. Pictograms are thought to be particularly beneficial for communicating information to consumers who speak English as a second language and to those with lower reading ability levels (USP, 2003). How- ever, research suggests that individuals with limited health literacy may have particular difficulties correctly interpreting pictograms (Price et al., 2003). A research projected funded by Pfizer, Inc. entitled “Pictograms: A Tool for Enhancing Health Care Outcomes Among Underserved Patients in Primary Care?” is currently examining whether pictograms affixed to medi- cation bottles enhance long-term recall of medication knowledge in patients identified as having difficulty with their medications; however, no data are as yet available from this 200-patient study. The nonprofit organization

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HEALTH SYSTEMS 215

U.S. Pharmacopeial Convention, Inc. (USP) maintains a free library of 81 pictograms that may be downloaded from the Internet. Figure 6-4 shows several examples of pictograms from the USP pictogram library.

Guidelines, templates, and tools are available that inform investigators and clinicians about ways to rewrite consent documents and other commu- nications so that they are easier to understand. For example, Philipson and others (1999) evaluated a writing improvement intervention program imple- mented at Hartford Hospital to help the research writer produce more comprehensible informed consent documents and determined that the pro- gram increased the percentages of consent documents that were readable and at the target reading grade level. The National Cancer Institute (1998) has prepared a set of templates and recommendations for the development of easy-to-understand informed consent documents for cancer clinical trials that are available online and were distributed to IRBs, hospitals, cancer centers, patient groups, and researchers. These templates are currently in use among cooperative cancer clinical trial groups across the United States. While such guidelines and tools are helpful aids, solutions must also sup- port changes in policies at the institutional and national level and become part of ongoing federal regulatory and monitoring activities of local com- pliance and IRBs. Box 6-3 displays two versions of an informed consent document: the original and simplified versions.

Technology-Based Communication Techniques

A number of the interventions displayed in Table 6-3 tested the effec- tiveness of technology-based communication techniques such as videos,

FIGURE 6-4 Examples of pictograms for patient education. SOURCE: United States Pharmacopeial Convention, Inc. Reprinted with permis- sion. Copyright © 2004 United States Pharmacopeial Convention, Inc. All rights reserved.

Take 4 times a day, with meals and at bedtime. This medicine may make you drowsy.

Take by mouth. Store in refrigerator.

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216 HEALTH LITERACY

BOX 6-3 Example of a Consent Form for Participation in

Smoking Cessation Study

Original Consent Document

Women are being invited to participate in a research in- vestigation to determine the efficacy of two methods of assisting pregnant women in their smoking cessation at- tempts. A comparison of the effectiveness of educational media in combination with a counseling method on smok- ing habits is being examined. It cannot be guaranteed that women may personally benefit from this investiga- tion, but in some instances, the knowledge gained might be beneficial to others. It is important to recognize that participation in this study is entirely voluntary. Individu- als may withdraw from the study at any time without pen- alty or loss of benefits to which they are otherwise enti- tled. Such withdrawal will not compromise any individual’s ability to receive medical care at this institution.

Revised Simplified Consent Document

Introduction

You are being asked to take part in a study that looks at ways to help pregnant women stop smoking. We want to know if booklets can help you to stop smoking. We also want to find out how nurses can help you to stop smoking. We cannot be sure that this study will help you, but it may help others. Taking part in this study is up to you. You can stop taking part in it at any time. It will not get in the way of your care at this clinic.

SOURCE: Doak et al. (1996). Reprinted with permission of the Oncology Nursing Society.

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HEALTH SYSTEMS 217

CD-ROMs, and interactive multimedia programs. Findings from these stud- ies are equivocal. Some show positive outcomes such as increased knowl- edge or self-care ability, while others show no effect. Two of these studies found no interaction between the technology-based intervention and the literacy level of the individuals in the studies (Kim et al., 2001; Wydra, 2001). Simply transforming text versions of disease-specific education to more visually oriented media (for example, CD-ROM), while associated with improvements in satisfaction, does not appear to increase knowledge among patients with limited health literacy (Kim et al., 2001).

Although there is not yet clear evidence about the effectiveness of these types of technology-based communication techniques for improving health literacy or mitigating the effects of limited health literacy, such techniques are supported by research in the fields of commercial and social marketing, health education, and health communication. Speaking of Health (IOM, 2002c) provides an overview of this evidence base. In addition, evaluation of interventions to improve the informed consent process provide support for technology-based communication techniques such as computerized de- cision aids (Rostom et al., 2002), videotape plus physician communication (Agre et al., 1997), telephone-based nursing interventions (Aaronson et al., 1996), and audiovisual documentation of oral consent (video + audiotape + photography) (Benitez et al., 2002).

The Foundation for Informed Medical Decision Making has produced education videos intended to aid in patient decision-making as part of shared decision-making programs in clinics, managed care organizations, and other settings (Kasper et al., 1992). Based on studies indicating which patient preferences are most likely to affect treatment choices, these prod- ucts incorporate testimonials about patient experiences and describe the consequences of different choices. A systematic review of this approach indicated that such decision aids improve knowledge, reduce decisional conflict, and stimulate patients to be more active in decision-making with- out increasing anxiety, while having variable effects on decisions and out- comes of decisions (O’Connor et al., 1999). Because health literacy is im- portant to the shared decision-making process, this type of approach is important to consider but, unfortunately, has not yet been evaluated with patients with limited health literacy or limited literacy.

One widely used type of technology-based communication technique is telephone-delivered interventions (TDIs) in which health-related counseling and reminders are delivered using the telephone. Speaking of Health (IOM, 2002c) reports that the efficacy of such interventions is strongly supported by the evidence base but that they are underused by diverse populations. TDIs can vary by the type of service provider, the extent to which the call is scripted and varies based on characteristics and responses of the individual, and the extent to which subsequent calls take into account information

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218 HEALTH LITERACY

from other encounters with the individual (IOM, 2002c). In addition, TDIs can be initiated by the individual through calls to helplines or services, or by the health system, through outbound calls (IOM, 2002c). The effect of these variable characteristics is yet to be evaluated among individuals with low literacy and low health literacy.

Testimony to the committee has revealed a wide array of activities in the category of technology-based communication techniques that are cur- rently being used. Some of these are summarized in Box 6-4.

BOX 6-4 Examples of Ongoing Approaches Using Technology-Based

Communication Techniques

• The Florida/Caribbean AIDS Education and Training Center, funded by HRSA, is developing a CD-ROM and web site that can be accessed at a computer in the provider’s office to present patient information to women who are neither literate nor fluent in English. The draft format includes pictures with simulta- neous narration in Creole or Spanish, and includes presentations for each com- monly used antiretroviral medication that demonstrate how to take the medica- tions as well as how to administer them to a child.

• The HRSA HIV/AIDS Bureau provides technical assistance and funding to the Northwest AIDS Education & Training Center’s Minority AIDS Initiative called Building Effective AIDS Response. This program developed a video centered on increasing health literacy about HIV-infection in Native American communi- ties in Washington, Oregon, Idaho, and Montana, and addressing the fear and shame barriers to accessing health care.

• The Improving Diabetes Efforts across Language and Literacy project, devel- oped at San Francisco General Hospital, intends to implement and evaluate disease management programs tailored to the language and literacy levels of patients with diabetes. The project will test the feasibility and acceptability of health communication interventions in a public delivery system and compare the effects of technologically oriented vs. interpersonally oriented chronic dis- ease support. Diabetes patients will be randomized to receive (1) weekly phone calls via an automated telephone diabetes management system that was de- veloped with the assistance of patients with limited literacy, (2) monthly group medical visits, or (3) usual care.

• CDC’s Health Communication Division has a cooperative agreement with the University of Southern California’s Norman Lear Center to provide information to TV shows, networks, writers, and producers. The Center develops tip sheets on priority topics for CDC, arranges biannual briefings for the Hollywood Writ- er’s Guild, and responds to requests from Hollywood producers for accurate and timely information. Television programming can provide accurate, timely information about disease, injury, and disability in their storylines for millions of people in a format available and understood by everybody.

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HEALTH SYSTEMS 219

Personal Communication and Education

Approaches in the category of personal communication and education include efforts such as classes or health education sessions for patients or other individuals, communication techniques used by health-care provid- ers, and patient navigator programs. Although a review of the field of health education programs is beyond the scope of this report, several stud- ies in Table 6-3 evaluated the effectiveness of education programs or one- on-one communication for individuals with low literacy skills. The study by Paasche-Orlow and colleagues (2003) found that among a groups of adults hospitalized for asthma exacerbation, all of the patients benefited from the one-on-one instruction regarding medications and inhaler technique, and that low health literacy as determined by the Short Test of Functional Health Literacy in Adults (S-TOFHLA) was not related to the need for additional instruction before understanding was achieved (see Table 6-3). In contrast, a study of patients with diabetes by Rothman and colleagues (2003) found that among the control group receiving no intervention, those with higher health literacy as measured by the REALM were more likely to achieve glucose control after 6 months than patients with low literacy, and among the intervention group, there was no difference in glucose control improvement between those with higher and lower health literacy (see Table 6-3). These findings suggest that the intervention was successful at mitigating the adverse effects of limited health literacy. The evaluation by Schillinger and others (2003b) of physician’s use of an interactive commu- nication strategy in which the physician assessed patient recall and compre- hension is another promising approach for individuals with limited health literacy. They found that the use of this strategy was associated with better glycemic control, although higher health literacy as measured by the S- TOFHLA was also associated with good glycemic control.

Programs using community health workers and patient navigators use one-on-one interaction to assist patients in navigating the health-care sys- tem. Such programs show promise for helping to mitigate the effects of limited health literacy since health system navigation has been noted as a particular problem for individuals with limited health literacy. Community health workers are known by various names (including lay health workers, outreach workers, and promotoras) and are lay members of the commu- nity who work in association with the local health-care system to provide health education, interpret health information, and assist in obtaining ac- cess to services. HRSA’s Bureau of Primary Health Care plays a large role in training and providing support to community health workers in a num- ber of settings, including farm worker promotoras at its Migrant Health Centers.

Patient navigator programs are often run by hospitals or other health-

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220 HEALTH LITERACY

care systems, and many historically have been designed for patients with cancer. One of the first patient navigator programs was initiated by Harold P. Freeman in 1990 at what was then Harlem Hospital Center in New York City. The impetus for the program came from findings by the American Cancer Society that poor people face specific barriers when attempting to seek diagnosis and treatment of cancer and that these barriers result in failure to seek care, or diagnosis at a later—and less treatable—stage of disease. This program seeks to alleviate financial barriers, communication and information barriers, medical system barriers (such as missed appoint- ments and lost results), and fear and emotional barriers by providing a navigator to patients with suspicious results from initial screening tests. The navigator acts as the patient’s advocate in the interval between the screen- ing and further diagnosis or treatment, assisting with such practical issues as paperwork for financial support, childcare, or transportation problems. The navigator also may translate medical jargon into understandable lan- guage, provide education about the disease and its treatment, assist the patient in communicating with and asking questions of his or her doctor, and be available to listen to fears and concerns (Health Care Association of New York, 2002). Follow-up from the first two years of the program showed that 87.5 percent of patients with navigators completed recom- mended breast biopsies, while the rate in patients without a navigator was 56.6 percent. Patients with navigators also completed the biopsy in signifi- cantly less time than those without navigators (Freeman et al., 1995). The Patient Navigator Program continues at the newly established Ralph Lauren Center for Cancer Care and Prevention in Harlem, and similar programs have since been established in other settings such as Solano County, Cali- fornia, where a Patient Navigator Program was founded in 1999 by the Solano Coalition for Better Health–Community Cancer Task Force (CancerActionNOW.org, 2003) and at the Washington Cancer Institute in Washington, DC.

Combined Approaches

Some approaches to health literacy have incorporated a number of the different types of approaches discussed above into one intervention. A study by Davis and colleagues (1998a) at a public hospital in Louisiana (shown in Table 6-3 above) sought to increase mammography usage in women attending ambulatory and eye clinics. One of the interventions provided a personal recommendation from one of the investigators, an easy-to-read brochure, and a 12-minute education program using a video based on focus groups. Results of this randomized controlled trial showed that this combined approach intervention was the only significant predictor of increased mammography usage at 6 months after controlling for literacy,

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HEALTH SYSTEMS 221

age, race, and baseline knowledge; patients who received only a recommen- dation or only a brochure did not show increased mammography usage. Similarly, some promising interventions that have sought to improve under- standing for informed consent involve the combined use of simplified writ- ten and verbal presentation to help patients better understand and concen- trate on the information (Chan et al., 2002; Langdon et al., 2002; Muss et al., 1979; Sorrell, 1991; Tindall et al., 1994; Young et al., 1990). Research about the effectiveness of combining tailored print communications with TDIs remains equivocal, with some studies supporting increased effective- ness while others showed no effect. This research is reviewed in Speaking of Health (IOM, 2002c). Molina Healthcare, a managed care organization that focuses on low-income and Medicaid populations, conducted an evalu- ation of a low-literacy program of this combined type. Families with a child younger than six years of age were randomly assigned to either the control group (n = 13,737 and 5,614 at 2 years) or an intervention group (n = 28,366 and 12,079 at 2 years) that received a self-help book in the mail, plus follow-up reminders. The self-help book was appropriate for low- literacy populations and was intended to supplement information provided by advice nurses that are available by phone to all plan members. Results after two years showed decreases among the intervention group in parents taking their child to the emergency department for fever, rash, and diar- rhea/vomiting and increases in parental self-efficacy for the same symp- toms. The intervention group also demonstrated a decrease in calls to the advice nurse, and were more likely to still be members of the plan after two years than those in the control group (Ryan, 2003).

Box 6-5 describes a promising combined approach to health literacy that uses written materials, patient educators, provider communication tech- niques, and follow-up telephone calls.

Tailored Materials

As Chapter 4 emphasizes, culture gives significance to health informa- tion and messages and thus approaches to health literacy should consider the background and experiences of people. Patient viewpoints can provide important insights about what, how, when, where, and in what manner information can best be presented. Research on the informed consent pro- cess that has looked at the experience from the perspective of the patient has found that this can aid in untangling the complex dynamics associated with the process (Albrecht et al., 2003; Cox, 2002; Ruckdeschel et al., 1996). As Ratzan (2001) points out, the challenge in designing effective and understandable health communications is to determine the optimal context, channels, and content which reflect the realities of people’s everyday lives, situations, and communication practices. In this way, messages are

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222 HEALTH LITERACY

BOX 6-5 Chronic Disease Management Program

Researchers and practitioners at the University of North Carolina have developed several chronic disease management programs that are designed to identify and overcome literacy-related barriers to care. The programs, which include interven- tions for diabetes, heart failure, chronic pain, and anticoagulation, are led by mid- level providers, mainly clinical pharmacist practitioners, who use evidence-based algorithms, a computerized patient registry, and literacy-independent teaching techniques to facilitate effective self-care and assure receipt of effective services and medications. The teaching techniques are used by clinical pharmacists and trained health educators in a one-on-one interaction with the patient during clinic visits, and feature:

• A teach-back method in which the patient teaches the content back to the ed- ucator

• Practical skills rather than complex physiology • Written educational materials designed for low-literacy users that the educator

reviews with the patient • Follow-up telephone calls and quick visits by the educator when the patient

returns to the clinic that serve to reinforce the education • A collaborative learning environment based on sensitivity to the role of literacy

in communication with patients

In each area, the program organizers have systematically measured literacy as well as relevant health outcomes. For diabetes and anticoagulation, completed studies have found that these programs can mitigate the adverse effects of low literacy. Studies in heart failure and chronic pain are ongoing. Their success in improving outcomes has led to stable funding for these programs from the hospi- tal’s quality improvement department.

grounded within the sociopolitical and environmental structures of the community and can better reflect the everyday lives of people. Furthermore, health information that is developed from an interdisciplinary approach is more likely to be effective, adopted, and successfully diffused within indi- vidual communities (Allen, 2001; Manderson, 1999; Watters, 2003). Project Toolbox is one example of an approach that used the viewpoints and experiences of the intended population to design the program; it is de- scribed in Box 6-6.

Similarly, characteristics of the individual patient or the target popula- tion can be used to tailor existing materials to fit specific situations. This is frequently done using computer-based algorithms that take various patient characteristics into account. These characteristics might include language, age, gender, ethnicity, reading ability, health literacy level, and the specific

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HEALTH SYSTEMS 223

questions, needs, and goals of the patient at that time. Research on tailored print communications has typically shown that they can improve health outcomes (for review, see Revere and Dunbar, 2001) but research also suggests that they are less effective at influencing individuals who are not thinking about making a behavior change (IOM, 2002c). Hayes (1998) found that patients who received easily readable tailored discharge instruc- tions subsequently performed better on a test of medication knowledge than patients given the standard preprinted instructions (see Table 6-3). Some current approaches that have come to the attention of the committee also use this strategy. For example, the Veterans Administration designed and distributes a “Flu Toolkit” that can be tailored to the educational and cultural needs of specific locales. Another example is currently being inves- tigated by researchers at the University of California–San Francisco. They have developed a simple new communication tool that allows clinicians to print for their patients an individualized, visual medicine schedule (VMS). The VMS is a computer-generated, single page of paper that contains the names and digital images of the prescribed doses of medication, with sym- bols signifying the daily dosing schedule. The VMS displays the doses on a weekly calendar to accommodate participants with medication doses that differ from day to day. It can be updated and printed by the provider using a color printer and can include instructions in Spanish and Chinese in addition to English.

However, such approaches may not meet the needs of those with lim- ited health literacy. Investigators from the Department of Obstetrics and Gynecology at the University of California–San Francisco have developed and evaluated a computerized, prenatal-testing, decision-assisting tool (“PT

BOX 6-6 Description of Project Toolbox

Project Toolbox, funded by the State of Florida in 1999, represented a communica- tion initiative of the H. Lee Moffitt Cancer Center & Research Institute. This project aimed to develop culturally, linguistically, and literacy relevant educational tools for community health-care providers and lay health educators for reaching medically underserved African-American and Hispanic migrant and seasonal farm workers with breast, cervical, and prostate cancer early detection and screening informa- tion. Four English and Spanish language toolboxes were created using social marketing and community-participatory research processes (Meade et al., 2002; Meade et al., 2003). Each toolbox contained a videotape, flipchart, educational brochures, and facilitator guide. Materials were written at a grade 3–4 reading level. Concepts were communicated using visuals, testimonials, and pictures that fit the everyday realities of the intended audiences.

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224 HEALTH LITERACY

Tool”), which is designed to inform pregnant women (and their partners) about prenatal testing options, and to assist them in making informed choices regarding prenatal testing for chromosomal disorders. The PT Tool provides background information about chromosomal abnormalities and other birth defects, highlighting the personal nature of prenatal testing decisions and the important role of individual preferences and values. The information is tailored for the individual patient, providing individualized risk estimates and allowing women to assess their own preferences and select testing options and strategies about which they would like more information. In a recently completed randomized controlled trial, it was found that women who viewed PT Tool had significantly greater knowl- edge, more satisfaction, and less decisional conflict than women who viewed a computerized version of the educational pamphlets distributed to preg- nant women by the State of California. Furthermore, women viewing PT Tool differed in their testing inclination toward and utilization of prenatal testing. That these effects were particularly strong in college-educated women, raises questions about whether the tool would be effective for individuals with limited health literacy. The investigators are now develop- ing a new, lower-literacy version of PT Tool that will be more engaging and accessible through the use of narrated animations and visual displays.

Partnerships

The increasing complexity of health systems—including new defini- tions of health, evolution of new media and the discovery of innovative biologic and genomic interventions, as well as the needs of diverse audi- ences—demands broad, interdisciplinary, multisectoral approaches. An IOM report, Bridging Disciplines in the Brain: Behavioral and Clinical Sciences, observes that “Solutions to existing and future health problems will likely require drawing on a variety of disciplines and approaches in which interdisciplinary efforts characterize not only the cutting edge of research but also the utilization of knowledge” (IOM, 2000a: 1).

To advance health literacy, it will be necessary to develop coordinated activities with local programs and institutions that improve quality and access to services, strengthen systems, and formulate effective policies. This includes fostering broad, interdisciplinary approaches to health lit- eracy and supporting the design and management processes necessary to make them successful. Additionally, this requires involvement beyond the traditional health-care system with universities, training institutions, pri- vate- and public-sector media, and governmental social service depart- ments.

A number of promising approaches brought to the committee’s atten- tion have featured interdisciplinary partnerships. Among the longest run-

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HEALTH SYSTEMS 225

ning and most well-known of these is the National Literacy and Health Program in Canada which currently involves a partnership among 27 na- tional organizations in Canada and is coordinated by the Canadian Public Health Association. In existence for more than a decade, its objectives are to (1) raise awareness among health professionals about the links between literacy and health; (2) build commitment among participating national health associations to promote literacy and health; and (3) establish links between national health associations and the federal government, literacy organizations, and provincial health associations in order to coordinate action on literacy and health. The program has undertaken a number of major projects such as producing a multimedia training resource for health professionals, providing a literacy and health curriculum for youth, and producing guidelines for prescription medication manufacturers. Although the National Literacy and Health Program has not as yet been evaluated formally (such an evaluation is currently under way), it appears to have had a major impact on both the health professional and literacy community in Canada.

In the United States, federal-level collaborative efforts have revolved around Healthy People 2010 (HHS, 2000). Healthy People 2010, as previ- ously discussed, includes an objective on health literacy which is “to im- prove the health literacy of persons with marginal or inadequate literacy skills.” The Office of the Secretary, ODPHP is the lead agency for this objective, and has been working to identify and coordinate health literacy activities across HHS, to convene HHS agencies to work collaboratively on health literacy, and to identify external partners. In 2000, ODPHP estab- lished a partnership with the National Center for Education Statistics, U.S. Department of Education, to develop health literacy measures that are included in the 2003 National Assessment of Adult Literacy. This assess- ment will provide the first national measures of health literacy. ODPHP has also collaborated with outside organizations on health literacy including the AMA and the Academy of General Dentistry.

Some state- and local-level partnerships also currently exist. For ex- ample, the Santa Clara (California) Medical Center, Santa Clara County Library, and Plane Tree Health Library have partnered since 2001 to oper- ate a center for health literacy on the Medical Center campus. The commu- nity learning center provides information on a variety of medical topics and conditions in English, Spanish, and Vietnamese in a variety of formats (print, audio, and video) with a focus on easy-to-read materials. The Medi- cal Center provides space readily accessible to patients, the Plane Tree Library provides supervision and expertise in resource development, and the Santa Clara Library recruits adult literacy students to visit the Center and provide literacy support to patrons referred by health-care providers. Since May 2001, more than 2,000 clients have been served.

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226 HEALTH LITERACY

Summary of Approaches

It can be seen that, as in the survey, most of the examples and studies cited above fall into the category of “simplifying materials,” which includes issues of multiple languages and translation, and can be used for enhanced provider–patient communication as well as in other settings. Several of them include the dimension of testing materials with the intended users for understanding and subsequently making appropriate modifications, which the committee has noted is very important. Some work is now in progress to develop nonprint approaches, such as visual aids, computer instruction, and entertainment programs. Many of the federal and some state efforts are in the training area, most notably many of the programs in the multiple bureaus of the HRSA. The emerging partnerships in both the public and private sectors will be critical if sustained and systematic progress is to be made.

When respondents to the survey discussed above were asked an open- ended question about lessons learned from their health literacy activities, three fairly consistent themes about lessons learned emerged:

1. Organizational support and policies are lacking 2. Quality standards are needed 3. A variety of health literacy modalities are needed to be effective

Some comments from survey responders that correspond to each of these themes appear in Box 6-7 to illustrate current sentiment in the field.

This glimpse of ongoing activities from the literature, from the survey, and from testimony and Committee knowledge indicates that concerned organizations and individuals have recognized the complexity of the health literacy problem and have begun to simplify and pilot test materials, and to acknowledge the need to test a wide variety of health literacy approaches. This is a substantial improvement from the 1980s and early 1990s. How- ever, it also highlights the lack of national- and organizational-level policy. Health literacy activities seemed to be based on the interest and determina- tion of a few people within organizations who frequently are not policy makers. Increased awareness and activities related to health literacy appear to spread anecdotally rather than as a result of policy. This type of ap- proach to the problem of limited health literacy is not sufficient to ensure continued interest and improvement in health literacy interventions. The next decade must see a significant increase in the number of programs and approaches that are developed and evaluated, as well as more systematic approaches and partnerships within and across both the public and private sectors.

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HEALTH SYSTEMS 227

BOX 6-7 Comments from Respondents to Survey

1. Organizational support and policies are lacking; health-literacy approaches are typically led by a few individuals within organizations. • “The most pressing thing in the field right now is that many individuals are

trying to make health literacy an issue in their organizations but they lack organizational/management support.”

• “Too many roadblocks exist; policy shifts are needed locally and nationally.” • “Executive leadership/attention is needed.” • “Visible department level support is needed for health literacy.” • “We WANT to serve the American public well . . . but there are certainly a lot

of extra bureaucratic hurdles that make this a lot harder than it should be.” • “As long as consumer communication is marginalized within organizations

(an afterthought to the main agenda) health literacy will be ignored.” • “Healthcare organizations will not invest in health-literacy interventions until

someone shows them the business case for doing so.” • “Having a pharmaceutical company (Pfizer) take ownership is not sufficient

and privatized the agenda.” 2. Quality standards are needed.

• “There need to be quality standards for training in this field.” • “Health literacy needs to be part of staff orientation—at all levels.” • “Quality standards for designing materials and learning approaches need to

be established.” • “Quality standards are needed to provide the support necessary to make a

difference in health-literacy initiatives.” • “Most health professionals don’t know about the issues of health literacy

and plain language and can’t define either term.” • “We find that staff develop material that tells too much ‘why’ when patients

need the ‘what’.” 3. A variety of health-literacy modalities are needed to be effective.

• “In order to be effective, health messages need to audience-specific and use various modalities.”

• “Developing materials for consumers is a science. Unfortunately, there is not one solution that fits everyone.”

• “Information is only useful if it is appropriate for the intended audience.” • “Sending a message is not enough, you need to be sure that your message

has been conveyed properly.” • “To be effective health communication needs to involve the intended audi-

ence in the development of information/education products.” • “Language and cultural competence and varied strategies and methods ap-

propriate to the identified audience are key to creating useful materials.”

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228 HEALTH LITERACY

Finding 6-1 Demands for reading, writing, and numeracy skills are intensified because of health-care systems’ complexities, advancements in scientific discov- eries, and new technologies. These demands exceed the health-literacy skills of most adults in the United States.

Finding 6-2 Health literacy is fundamental to quality care, and relates to three of the six aims of quality improvement described in the IOM Crossing the Quality Chasm report: safety, patient-centered care, and equitable treatment. Self-man- agement and health literacy have been identified by IOM as cross-cutting priorities for health-care quality and disease prevention.

Finding 6-3 The readability levels of informed consent documents (for research and clinical practice) exceed the documented average reading levels of the major- ity of adults in the United States. This has important ethical and legal implications that have not been fully explored.

Recommendation 6-1 Health-care systems, including private systems, Medi- care, Medicaid, the Department of Defense, and the Veterans Administration should develop and support demonstration programs to establish the most effec- tive approaches to reducing the negative effects of limited health literacy. To ac- complish this, these organizations should:

• Engage consumers in the development of health communications and in- fuse insights gained from them into health messages.

• Explore creative approaches to communicate health information using print- ed and electronic materials and media in appropriate and clear language. Messag- es must be appropriately translated and interpreted for diverse audiences.

• Establish methods for creating health information content in appropriate and clear language using relevant translations of health information.

• Include cultural and linguistic competency as an essential measure of qual- ity of care.

Recommendation 6-2 HHS should fund research to define the needed health- literacy tasks and skills for each of the priority areas for improvement in health-care quality. Funding priorities should include participatory research that engages the intended populations.

Recommendation 6-3 Health literacy assessment should be a part of health- care information systems and quality data collection. Public and private accredita- tion bodies, including Medicare, NCQA, and JCAHO, should clearly incorporate health literacy into their accreditation standards.

Recommendation 6-4 HHS should take the lead in developing uniform stan- dards for addressing health literacy in research, service, and training applications. This includes addressing the appropriateness of research design and methods and the match among the readability of instruments, the literacy level, and the cultural and linguistic needs of study participants. In order to achieve meaningful research outcomes in all fields:

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HEALTH SYSTEMS 229

REFERENCES

Aaronson NK, Visser-Pol E, Leenhouts GH, Muller MJ, van der Schot AC, van Dam FS, Keus RB, Koning CC, ten Bokkel Huinink WW, van Dongen JA, Dubbelman R. 1996. Tele- phone-based nursing intervention improves the effectiveness of the informed consent process in cancer clinical trials. Journal of Clinical Oncology. 14(3): 984–996.

Agre P, McKee K, Gargon N, Kurtz RC. 1997. Patient satisfaction with an informed consent process. Cancer Practice. 5(3): 162–167.

Albrecht TL, Ruckdeschel JC, Riddle DL, Blanchard CG, Penner LA, Coovert MD, Quinn G. 2003. Communication and consumer decision making about cancer clinical trials. Pa- tient Education and Counseling. 50(1): 39–42.

Allen CE. 2001. 2000 presidential address: Eliminating health disparities. American Journal of Public Health. 91(7): 1142–1143.

Appelbaum PS. 1997. Rethinking the conduct of psychiatric research. Archives of General Psychiatry. 54(2): 117–120.

Baker LM, Wilson FL. 1996. Consumer health materials recommended for public libraries: Too tough to read? Public Libraries. 35: 124–130.

Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, Imara M. 1996. The health care experience of patients with low literacy. Archives of Family Medicine. 5(6): 329–334.

Benitez O, Devaux D, Dausset J. 2002. Audiovisual documentation of oral consent: A new method of informed consent for illiterate populations. Lancet. 359(9315): 1406–1407.

Bennett CL, Ferreira MR, Davis TC, Kaplan J, Weinberger M, Kuzel T, Seday MA, Sartor O. 1998. Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. Journal of Clinical Oncology. 16(9): 3101–3104.

Benson JG, Forman WB. 2002. Comprehension of written health care information in an affluent geriatric retirement community: Use of the test of functional health literacy. Gerontology. 48(2): 93–97.

Berland GK, Elliott MN, Morales LS, Algazy JI, Kravitz RL, Broder MS, Kanouse DE, Munoz JA, Puyol JA, Lara M, Watkins KE, Yang H, McGlynn EA. 2001. Health information on the Internet: Accessibility, quality, and readability in English and Spanish. Journal of the American Medical Association. 285(20): 2612–2621.

Bertakis KD. 1977. The communication of information from physician to patient: A method for increasing patient retention and satisfaction. Journal of Family Practice. 5(2): 217– 222.

• Investigators should involve patients (or subjects) in the research process to ensure that methods and instrumentation are valid and reliable and in a lan- guage easily understood.

• NIH should collaborate with appropriate federal agencies and institutional review boards to formulate the policies and criteria to ensure that appropriate con- sideration of literacy is an integral part of the approval of research involving human subjects.

• NIH should take literacy levels into account when considering informed con- sent issues in human subjects research. IRBs should meet existing standards re- lated to the readability of informed consent documents.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

230 HEALTH LITERACY

Bodenheimer T. 1999. Disease management—Promises and pitfalls. New England Journal of Medicine. 340(15): 1202–1205.

Bray JK, Yentis SM. 2002. Attitudes of patients and anaesthetists to informed consent for specialist airway techniques. Anaesthesia. 57(10): 1012–1015.

CancerActionNOW.org. 2003. CancerActionNOW.org: Compassionate Use for Cancer Pa- tients. [Online]. Available: http://canceractionnow.org/ [accessed: September, 2003].

CDC (Centers for Disease Control and Prevention). 2003. About CDC. [Online]. Available: http://www.cdc.gov/aboutcdc.htm [accessed: October, 2003].

Chan Y, Irish JC, Wood SJ, Rotstein LE, Brown DH, Gullane PJ, Lockwood GA. 2002. Patient education and informed consent in head and neck surgery. Archives of Otolaryn- gology–Head and Neck Surgery. 128(11): 1269–1274.

Cole SA, Bird J. 2000. The Medical Interview: The Three-Function Approach. 2nd edition. St Louis: Mosby.

Cooper LA, Roter DL. 2003. Patient-provider communication: The effect of race and ethnicity on process and outcomes in health care. In: Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, Editors. Washing- ton, DC: The National Academies Press. Pp. 336–354.

Cox K. 2002. Informed consent and decision-making: Patients’ experiences of the process of recruitment to phases I and II anti-cancer drug trials. Patient Education and Counseling. 46(1): 31–38.

Coyne CA, Xu R, Raich P, Plomer K, Dignan M, Wenzel LB, Fairclough D, Habermann T, Schnell L, Quella S, Cella D, Eastern Cooperative Oncology Group. 2003. Randomized, controlled trial of an easy-to-read informed consent statement for clinical trial participa- tion: A study of the Eastern Cooperative Oncology Group. Journal of Clinical Oncol- ogy. 21(5): 836–842.

Crane JA. 1997. Patient comprehension of doctor-patient communication on discharge from the emergency department. Journal of Emergency Medicine. 15(1): 1–7.

Criscione LG, Sugarman J, Sanders L, Pisetsky DS, St Clair EW. 2003. Informed consent in a clinical trial of a novel treatment for rheumatoid arthritis. Arthritis and Rheumatism. 49(3): 361–367.

Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. 1994. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 93(3): 460–468.

Davis TC, Bocchini JA Jr, Fredrickson D, Arnold C, Mayeaux EJ, Murphy PW, Jackson RH, Hanna N, Paterson M. 1996. Parent comprehension of polio vaccine information pam- phlets. Pediatrics. 97(6 Pt 1): 804–810.

Davis TC, Fredrickson DD, Arnold C, Murphy PW, Herbst M, Bocchini JA. 1998a. A polio immunization pamphlet with increased appeal and simplified language does not improve comprehension to an acceptable level. Patient Education and Counseling. 33(1): 25–37.

Davis TC, Holcombe RF, Berkel HJ, Pramanik S, Divers SG. 1998b. Informed consent for clinical trials: A comparative study of standard versus simplified forms. Journal of the National Cancer Institute. 90(9): 668–674.

Davis TC, Berkel HJ, Arnold CL, Nandy I, Jackson RH, Murphy PW. 1998c. Intervention to increase mammography utilization in a public hospital. Journal of General Internal Medicine. 13(4): 230–233.

Doak LG, Doak CC, Meade CD. 1996. Strategies to improve cancer education materials. Oncology Nursing Forum. 23(8): 1305–1312.

Eaton ML, Holloway RL. 1980. Patient comprehension of written drug information. Ameri- can Journal of Hospital Pharmacy. 37(2): 240–243.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

HEALTH SYSTEMS 231

Edlin M. 2002. Consumer-Directed Health Care—The goals: More choice, more control. Healthplan Magazine. 43(2): 12–17.

Elswick, J (BenefitNews.com). 2003. Consumer-Driven Health on a Roll. [Online]. Available: http://www.benefitnews.com/detail.cfm?id=4734&terms=|elswick| [accessed: August, 2003].

FACCT (Foundation for Accountability). 2002. Who’s in the Drivers Seat? Increasing Con- sumer Involvement in Health Care. [Online]. Available: http://www.facct.org/facct/doc libFiles/documentFile_528.pdf [accessed: August, 2003].

Federman AD, Cook EF, Phillips RS, Puopolo AL, Haas JS, Brennan TA, Burstin HR. 2001. Intention to discontinue care among primary care patients: Influence of physician behav- ior and process of care. Journal of General Internal Medicine. 16(10): 668–674.

Fiscella K, Franks P, Gold MR, Clancy CM. 2000. Inequality in quality: Addressing socioeco- nomic, racial, and ethnic disparities in health care. Journal of the American Medical Association. 283(19): 2579–2584.

Flores G, Laws MB, Mayo SJ, Zuckerman B, Abreu M, Medina L, Hardt EJ. 2003. Errors in medical interpretation and their potential clinical consequences in pediatric encounters. Pediatrics. 111(1): 6–14.

Freda MC, DeVore N, Valentine-Adams N, Bombard A, Merkatz IR. 1998. Informed consent for maternal serum alpha-fetoprotein screening in an inner city population: How in- formed is it? Journal of Obstetric, Gynecologic, and Neonatal Nursing. 27(1): 99–106.

Freeman HP, Muth BJ, Kerner JF. 1995. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Practice. 3(1): 19–30.

Gaba AG, Grossman SA. 2003. Braine Readability of informed consent forms at Johns Hopkins Hospital clinical oncology research protocols (1991–1999). Proceedings of the American Society for Clinical Oncology. 22: 524.

Gardner AW, Jones JW. 2002. An audit of the current consent practices of consultant orth- odontists in the UK. Journal of Orthodontics. 29(4): 330–334.

Gerteis M, Edgman-Levitan S, Walker JD, Stoke DM, Cleary PD, Delbanco TL. 1993. What patients really want. Health Management Quarterly. 15(3): 2–6.

Goldstein AO, Frasier P, Curtis P, Reid A, Kreher NE. 1996. Consent form readability in university-sponsored research. Journal of Family Practice. 42(6): 606–611.

Good BJ, Good MJD. 1981. The meaning of symptoms: A cultural hermeneutic model for clinical practice. In: The Relevance of Social Science for Medicine. Eisenberg L, Kleinman A, Editors. Dordecht, Holland: Reidel. Pp. 165–196.

Graber MA, Roller CM, Kaeble B. 1999. Readability levels of patient education material on the World Wide Web. The Journal of Family Practice. 48(1): 58–61.

Gribble JN. 1999. Informed consent documents for BRCA1 and BRCA2 screening: How large is the readability gap? Patient Education and Counseling. 38(3): 175–183.

Grossman SA, Piantadosi S, Covahey C. 1994. Are informed consent forms that describe clinical oncology research protocols readable by most patients and their families? Jour- nal of Clinical Oncology. 12(10): 2211–2215.

Grundner TM. 1980. On the readability of surgical consent forms. New England Journal of Medicine. 302(16): 900–902.

Hammerschmidt DE, Keane MA. 1992. Institutional Review Board (IRB) review lacks impact on the readability of consent forms for research. The American Journal of the Medical Sciences. 304(6): 348–351.

Hayes KS. 1998. Randomized trial of geragogy-based medication instruction in the emer- gency department. Nursing Research. 47(4): 211–218.

Health Care Association of New York. 2002. HANYS Breast Cancer Demonstration Project. [Online]. Available: www.hanys.org/quality_index/Breast_Cancer_Project/pnresourcekit. htm [accessed: September, 2003].

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

232 HEALTH LITERACY

Heffler S, Smith S, Won G, Clemens MK, Keehan S, Zezza M. 2002. Health spending projec- tions for 2001–2011: The latest outlook. Faster health spending growth and a slowing economy drive the health spending projection for 2001 up sharply. Health Affairs. 21(2): 207–218.

Hewlett S. 1996. Consent to clinical research—Adequately voluntary or substantially influ- enced? Journal of Medical Ethics. 22(4): 232–237.

HHS (U.S. Department of Health and Human Services). 2000. Healthy People 2010: Under- standing and Improving Health. Washington, DC: U.S. Department of Health and Hu- man Services. [Online]. Available: http://www.health.gov/healthypeople [accessed: Janu- ary 15, 2003].

Hochhauser M. 1997. Can your HMO’s documents pass the readability test? Managed Care. 6(9): 60A, 60G–60H.

Hopper KD, TenHave TR, Hartzel J. 1995. Informed consent forms for clinical and research imaging procedures: How much do patients understand? American Journal of Roentgen- ology. 164(2): 493–496.

Hopper KD, TenHave TR, Tully DA, Hall TE. 1998. The readability of currently used surgi- cal/procedure consent forms in the United States. Surgery. 123(5): 496–503.

Horng S, Emanuel EJ, Wilfond B, Rackoff J, Martz K, Grady C. 2002. Descriptions of benefits and risks in consent forms for phase 1 oncology trials. New England Journal of Medicine. 347(26): 2134–2140.

Hudman J. 2003. Understanding the Medicaid and Low-Income Populations: Implications for Health Literacy. Presentation given at a workshop of the Institute of Medicine Com- mittee on Health Literacy. April 30, 2003, Washington, DC.

Hussey LC. 1994. Minimizing effects of low literacy on medication knowledge and compli- ance among the elderly. Clinical Nursing Research. 3(2): 132–145.

IOM (Institute of Medicine). 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Haynes MA, Smedley BD, Editors. Washington, DC: National Academy Press.

IOM. 2000a. Bridging Disciplines in the Brain, Behavioral, and Clinical Sciences. Pellmar TC, Eisenberg L, Editors. Washington, DC: National Academy Press.

IOM. 2000b. To Err Is Human: Building a Safer Health System. Washington, DC: National Academy Press.

IOM. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Wash- ington, DC: National Academy Press.

IOM. 2002a. Care Without Coverage: Too Little, Too Late. Washington, DC: National Academy Press.

IOM. 2002b. Health Insurance Is a Family Matter. Washington, DC: The National Acad- emies Press.

IOM. 2002c. Speaking of Health: Assessing Health Communication Strategies for Diverse Populations. Washington, DC: The National Academies Press.

IOM. 2003a. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, Editors. Washington, DC: The National Academies Press.

IOM. 2003b. Priority Areas for National Action: Transforming Healthcare Quality. Adams K, Corrigan JM, Editors. Washington, DC: The National Academies Press.

Jacobson TA, Thomas DM, Morton FJ, Offutt G, Shevlin J, Ray S. 1999. Use of a low- literacy patient education tool to enhance pneumococcal vaccination rates: A random- ized controlled trial. Journal of the American Medical Association. 282(7): 646–650.

JCAHO (Joint Commission on Accreditation of Healthcare Organizations). 2003. Facts about the Joint Commission on Accreditation of Healthcare Organizations. [Online]. Avail- able: http://www.jcaho.org/about+us/index.htm [accessed: October, 2003].

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

HEALTH SYSTEMS 233

Jubelirer SJ. 1991. Level of reading difficulty in educational pamphlets and informed consent documents for cancer patients. The West Virginia Medical Journal. 87(12): 554–557.

Kaiser Commission on Medicaid and the Uninsured. 2003a. Access to Care for the Unin- sured: An Update. Pub. No. 4142. Washington, DC: The Henry J. Kaiser Family Foun- dation.

Kaiser Commission on Medicaid and the Uninsured. 2003b. The Uninsured: A Primer. Key Facts about Americans Without Health Insurance. Washington, DC: The Henry J. Kai- ser Family Foundation.

Kalichman SC, Rompa D. 2000. Functional health literacy is associated with health status and health-related knowledge in people living with HIV-AIDS. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology. 25(4): 337–344.

Kalichman SCP, Ramachandran BB, Catz SP. 1999. Adherence to combination antiretroviral therapies in HIV patients of low health literacy. Journal of General Internal Medicine. 14(5): 267–273.

Kasper JF, Mulley AG Jr, Wennberg JE. 1992. Developing shared decision-making programs to improve the quality of health care. Quality Review Bulletin. 18(6): 183–190.

Kaufer DS, Steinberg ER, Toney SD. 1983. Revising medical consent forms: An empirical model and test. Law, Medicine, and Health Care. 11(4): 155–162.

Kerka S. 2000. Health and Adult Literacy. Practice Application Brief No. 7. Columbus, OH: ERIC Clearinghouse on Adult, Career, and Vocational Education.

Kim SP, Knight SJ, Tomori C, Colella KM, Schoor RA, Shih L, Kuzel TM, Nadler RB, Bennett CL. 2001. Health literacy and shared decision making for prostate cancer pa- tients with low socioeconomic status. Cancer Investigation. 19(7): 684–691.

King J. 2001. Consent: The patients’ view—A summary of findings from a study of patients’ perceptions of their consent to dental care. British Dental Journal. 191(1): 36–40.

Kleinman A. 1980. Patients and Healers in the Context of Culture: An Exploration of the Borderland Between Anthropology, Medicine, and Psychiatry. Berkeley, CA: University of California Press.

Langdon IJ, Hardin R, Learmonth ID. 2002. Informed consent for total hip arthroplasty: Does a written information sheet improve recall by patients? Annals of the Royal Col- lege of Surgeons of England. 84(6): 404–408.

Lawson SL, Adamson HM. 1995. Informed consent readability: Subject understanding of 15 common consent form phrases. IRB; A Review of Human Subjects Research. 17(5–6): 16–19.

Lechter K. 2002. Patient Information Activities at the FDA. Presentation given at a workshop of the Institute of Medicine Committee on Health Literacy. December 10, 2002, Wash- ington, DC.

Levit K, Smith C, Cowan C, Lazenby H, Martin A. 2002. Inflation spurs health spending in 2000. Health Affairs. 21(1): 172–181.

Levit K, Smith C, Cowan C, Lazenby H, Sensenig A, Catlin A. 2003. Trends in U.S. health care spending, 2001. Health Affairs. 22(1): 154–64.

Linzer M, Konrad TR, Douglas J, McMurray JE, Pathman DE, Williams ES, Schwartz MD, Gerrity M, Scheckler W, Bigby JA, Rhodes E. 2000. Managed care, time pressure, and physician job satisfaction: Results from the physician worklife study. Journal of General Internal Medicine. 15(7): 441–450.

Lorig KR, Sobel DS, Stewart AL, Brown BW Jr, Bandura A, Ritter P, Gonzalez VM, Laurent DD, Holman HR. 1999. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial. Medical Care. 37(1): 5–14.

LoVerde ME, Prochazka AV, Byyny RL. 1989. Research consent forms: Continued unread- ability and increasing length. Journal of General Internal Medicine. 4(5): 410–412.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

234 HEALTH LITERACY

MacKinnon JR. 1984. Health professionals’ patterns of communication: Cross-purpose or problem-solving? Journal of Allied Health. 13(1): 3–12.

Mader TJ, Playe SJ. 1997. Emergency medicine research consent form readability assessment. Annals of Emergency Medicine. 29(4): 534–539.

Manderson L. 1999. New perspectives in anthropology and cancer control, disease and pal- liative care. Anthropology and Medicine. 6(3): 317–322.

Martin A, Whittle L, Levit K, Won G, Hinman L. 2002. Health care spending during 1991– 1998: A fifty-state review. Health Affairs. 21(4): 112–126.

Mathew J, McGrath J. 2002. Readability of consent forms in schizophrenia research. Austra- lian and New Zealand Journal of Psychiatry. 36(4): 564–565.

Matthews TL, Sewell JC. 2002. State Official’s Guide to Health Literacy. Lexington, KY: The Council of State Governments.

McCulloch DK, Price MJD, Hindmarsh M, Wagner EH. 2000. Improvement in diabetes care using an integrated population-based approach in a primary care setting. Disease Man- agement. 3(2): 75–82.

McManus PL, Wheatley KE. 2003. Consent and complications: Risk disclosure varies widely between individual surgeons. Annals of the Royal College of Surgeons of England. 85(2): 79–82.

Meade CD, Byrd JC. 1989. Patient literacy and the readability of smoking education litera- ture. American Journal of Public Health. 79(2): 204–206.

Meade CD, Howser DM. 1992. Consent forms: How to determine and improve their read- ability. Oncology Nursing Forum. 19(10): 1523–1528.

Meade CD, Byrd JC, Lee M. 1989. Improving patient comprehension of literature on smok- ing. American Journal of Public Health. 79(10): 1411–1412.

Meade CD, McKinney WP, Barnas GP. 1994. Educating patients with limited literacy skills: The effectiveness of printed and videotaped materials about colon cancer. American Journal of Public Health. 84(1): 119–121.

Meade CD, Calvo A, Cuthbertson D. 2002. Impact of culturally, linguistically and literacy relevant cancer information among Hispanic migrant and seasonal farmworkers. Jour- nal of Cancer Education. 17: 50–54.

Meade CD, Calvo A, Rivera M, Baer R. 2003. Focus groups in the design of prostate cancer screening information for Hispanic farmworker and African American men. Oncology Nursing Forum. 30(6): 967–975.

Meeuwesen L, Bensing J, van den Brink-Muinen A. 2002. Communicating fatigue in general practice and the role of gender. Patient Education and Counseling. 48(3): 233–242.

Michielutte R, Bahnson J, Dignan MB, Schroeder EM. 1992. The use of illustrations and narrative text style to improve readability of a health education brochure. Journal of Cancer Education. 7(3): 251–260.

Molina C, Zambrana RE, Aguirre-Molina M. 1994. The influence of culture, class, and environment on health care. In: Latino Health in the U.S.: A Growing Challenge. Molina C, Aguirre-Molina M, Editors. Washington, DC: American Public Health Association. Pp. 23–43.

Morales LS, Weidmer BO, Hays RD. 2001. Readability of CAHPS® 2.0 Child and Adult Core Surveys. In: Seventh Conference on Health Survey Research Methods. Lynamon ML, Kulka RA, Editors. Pub. No. (PHS) 01-1013. Hyattsville, MD: Department of Health and Human Services.

Mulrow C, Bailey S, Sonksen PH, Slavin B. 1987. Evaluation of an Audiovisual Diabetes Education Program: Negative results of a randomized trial of patients with non-insulin- dependent diabetes mellitus. Journal of General Internal Medicine. 2(4): 215–219.

Murphy PW, Chesson AL, Walker L, Arnold CL, Chesson LM. 2000. Comparing the effec- tiveness of video and written material for improving knowledge among sleep disorders clinic patients with limited literacy skills. Southern Medical Journal. 93(3): 297–304.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

HEALTH SYSTEMS 235

Muss HB, White DR, Michielutte R, Richards F 2nd, Cooper MR, Williams S, Stuart JJ, Spurr CL. 1979. Written informed consent in patients with breast cancer. Cancer. 43(4): 1549–1556.

NCI (National Cancer Institute). 1998. Simplification of Informed Consent Documents. U.S. Department of Health and Human Services. [Online]. Available: http://www.cancer.gov/ clinicaltrials/understanding/simplification-of-informed-consent-docs/ [accessed: Septem- ber 30, 2003].

Norris SL, Nichols PJ, Caspersen CJ, Glasgow RE, Engelgau MM, Jack L, Isham G, Snyder SR, Carande-Kulis VG, Garfield S, Briss P, McCulloch D. 2002a. The effectiveness of disease and case management for people with diabetes. A systematic review. American Journal of Preventive Medicine. 22(4 Supplement): 15–38.

Norris SL, Nichols PJ, Caspersen CJ, Glasgow RE, Engelgau MM, Jack L, Snyder SR, Carande-Kulis VG, Isham G, Garfield S, Briss P, McCulloch D. 2002b. Increasing diabe- tes self-management education in community settings. A systematic review. American Journal of Preventive Medicine. 22(4 Supplement): 39–66.

NRC (National Research Council). 2003. Safety Is Seguridad: A Workshop Summary. Wash- ington, DC: The National Academies Press.

O’Connor AM, Rostom A, Fiset V, Tetroe J, Entwistle V, Llewellyn-Thomas H, Holmes- Rovner M, Barry M, Jones J. 1999. Decision aids for patients facing health treatment or screening decisions: Systematic review. British Medical Journal. 319(7212): 731–734.

Ogloff JR, Otto RK. 1991. Are research participants truly informed? Readability of informed consent forms used in research. Ethics and Behavior. 1(4): 239–252.

Ordovas BJP, Lopez BE, Urbieta SE, Torregrossa S.R., Jimenez TNV. 1999. An analysis of patient information sheets for obtaining informed consent in clinical trials. Medicina Clinica. 112(3): 90–94.

Osborne H, Hochhauser M. 1999. Readability and comprehension of the introduction to the Massachusetts Health Care Proxy. Hospital Topics. 77(4): 4–6.

Osuna E, Perez-Carceles MD, Perez-Moreno JA, Luna A. 1998. Informed consent. Evaluation of the information provided to patients before anaesthesia and surgery. Medicine and Law. 17(4): 511–518.

Osuna E, Lorenzo MD, Perez-Carceles MD, Luna A. 2001. Informed consent: Evaluation of the information provided to elderly patients. Medicine and Law. 20(3): 379–384.

Paasche-Orlow M. 2003. Education of patients with asthma and low literacy. Abstract. Jour- nal of General Internal Medicine. 18(Supplement 1).

Paasche-Orlow MK, Taylor HA, Brancati FL. 2003. Readability standards for informed- consent forms as compared with actual readability. New England Journal of Medicine. 348(8): 721–726.

Pepe MV, Chodzko-Zajko WJ. 1997. Impact of older adults’ reading ability on the compre- hension and recall of cholesterol information. Journal of Health Education. 28(1): 21– 27.

Philipson SJ, Doyle MA, Gabram SG, Nightingale C, Philipson EH. 1995. Informed consent for research: A study to evaluate readability and processability to effect change. Journal of Investigative Medicine. 43(5): 459–467.

Philipson SJ, Doyle MA, Nightingale C, Bow L, Mather J, Philipson EH. 1999. Effectiveness of a writing improvement intervention program on the readability of the research in- formed consent document. Journal of Investigative Medicine. 47(9): 468–476.

Piette JD. 1999. Satisfaction with care among patients with diabetes in two public health care systems. Medical Care. 37(6): 538–546.

Piette JD. 2000. Interactive voice response systems in the diagnosis and management of chronic disease. The American Journal of Managed Care. 6(7): 817–827.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

236 HEALTH LITERACY

Pignone M. 2003. Literacy and Health: Findings from the Systematic Review for AHRQ. Presentation at the Pfizer Health Literacy Initiative 6th National Conference. Key Ad- vances in Health Literacy: Models for Action. September 18–19, 2003, Washington, DC.

Pope JE, Tingey DP, Arnold JM, Hong P, Ouimet JM, Krizova A. 2003. Are subjects satisfied with the informed consent process? A survey of research participants. [Comment]. Jour- nal of Rheumatology. 30(4): 815–824.

Powell EC, Tanz RR, Uyeda A, Gaffney MB, Sheehan KM. 2000. Injury prevention education using pictorial information. Pediatrics. 105(1): e16.

Price S, Raynor DK, Knapp P. 2003. Developing Effective Medicine Pictograms for the UK. Abstract. Presentation at the Health Services Research and Pharmacy Practice Confer- ence, Belfast. [Online]. Available: http://hsrpp.org.uk/abstracts/2003_41.shtml [accessed: December 15, 2003].

Raich PC, Plomer KD, Coyne CA. 2001. Literacy, comprehension, and informed consent in clinical research. Cancer Investigation. 19(4): 437–445.

Ratzan SC. 2001. Health literacy: Communication for the public good. Health Promotion International. 16(2): 207–214.

Reicken HW, Ravich R. 1982. Informed consent to biomedical research in Veterans Adminis- tration Hospitals. Journal of the American Medical Association. 248: 344–348.

Reid JC, Klachko DM, Kardash CAM, Robinson RD, Scholes R, Howard D. 1995. Why people don’t learn from diabetes literature: Influence of text and reader characteristics. Patient Education and Counseling. 25(1): 31–38.

Revere D, Dunbar PJ. 2001. Review of computer-generated outpatient health behavior inter- ventions: Clinical encounters “in Absentia.” Journal of the American Medical Informatics Association. 8: 62–79.

Rivera R, Reed JS, Menius D. 1992. Evaluating the readability of informed consent forms used in contraceptive clinical trials. International Journal of Gynecology and Obstetrics. 38(3): 227–230.

Root J, Stableford S. 1999. Easy to read consumer communication: A missing link in medic- aid managed care. Journal of Health Politics, Policy and Law. 24(1): 1–26.

Rosenbaum S, Sonosky CA, Shaw K, Zakheim MH. 2001. Negotiating the New Health System: A Nationwide Study of Medicaid Managed Care Contracts. Shin P, Repasch L, Managing Editors. Center for Health Services Research and Policy, George Washington University.

Ross R. 1996. Returning to the Teachings: Exploring Aboriginal Justice. Toronto: Penguin Books.

Rost K, Roter D. 1987. Predictors of recall of medication regimens and recommendations for lifestyle change in elderly patients. Gerontologist. 27(4): 510–515.

Rostom A, O’Connor A, Tugwell P, Wells G. 2002. A randomized trial of a computerized versus an audio-booklet decision aid for women considering post-menopausal hormone replacement therapy. Patient Education and Counseling. 46(1): 67–74.

Roter DL. 2000. The outpatient medical encounter and elderly patients. Clinics in Geriatric Medicine. 16(1): 95–107.

Roter DL, Hall JA. 1992. Doctors Talking with Patients/Patients Talking with Doctors: Improving Communication in Medical Visits. Westport, CT: Auburn House.

Roter DL, Stewart M, Putnam SM, Lipkin M Jr, Stiles W, Inui TS. 1997. Communication patterns of primary care physicians. Journal of the American Medical Association. 277(4): 350–356.

Roter DL, Stashefsky-Margalit R, Rudd R. 2001. Current perspectives on patient education in the US. Patient Education and Counseling. 44(1): 79–86.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

HEALTH SYSTEMS 237

Rother HA, London L, Maruping M, Miller S. 2002. Hazard Communication for Pesticide Safety in Developing Countries: When is the Message Adequate? Bethesda, MD: Society for Occupational and Environmental Health Conference: Pesticide Exposure and Health.

Rothman RL, Pignone M, Malone R, Bryant B, DeWalt DA, Crigler B. 2003. A longitudinal analysis of the relationship between literacy and metabolic control in patients with diabetes. Abstract. Journal of General Internal Medicine. 18(Supplement 1).

Ruckdeschel JC, Albrecht TL, Blanchard C, Hemmick RM. 1996. Communication, accrual to clinical trials, and the physician-patient relationship: implications for training programs. Journal of Cancer Education. 11(2): 73–79.

Rudd RE. 2003. Objective 11-2: Improvement of Health Literacy. In: Communicating Health: Priorities and Strategies for Progress. Washington, DC: Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services.

Rudd RE, DeJong W. 2000. In Plain Language: The Need for Effective Communication in Medicine and Public Health [Video]. Cambridge, MA: Harvard University.

Rudd RE, Colton T, Schacht R. 2000. An Overview of Medical and Public Health Literature Addressing Literacy Issues: An Annotated Bibliography. Report #14. Cambridge, MA: National Center for the Study of Adult Learning and Literacy

Ryan M. 2003. Demand Management. Presentation for Molina Healthcare. Scala M. 2002. Linking Health Literacy and Medicare Education. Presentation given at a

workshop of the Institute of Medicine Committee on Health Literacy. December 10, 2002, Washington, DC.

Scandlen, G. (Galen Institute). 2003. Consumer Driven Health Care: New Tools for a New Paradigm. [Online]. Available: http://www.galen.org/news/New_Tools.pdf [accessed: August, 2003].

Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GaD, Bindman AB. 2002. Association of health literacy with diabetes outcomes. Journal of the American Medical Association. 288(4): 475–482.

Schillinger D, Machtinger E, Win K, Wang F, Chan L-L, Rodriguez ME. 2003a. Are pictures worth a thousand words? Communication regarding medications in a public hospital anticoagulation clinic. Abstract. Journal of General Internal Medicine. 18(Supplement 1): 187.

Schillinger D, Piette J, Grumbach K, Wang F, Wilson C, Daher C, Leong-Grotz K, Castro C, Bindman AB. 2003b. Closing the loop: Physician communication with diabetic patients who have low health literacy. Archives of Internal Medicine. 163(1): 83–90.

Schillinger D, Bindman A, Stewart A, Wang F, Piette J. 2004. Functional health literacy and the quality of physician-patient communication among diabetes patients. Patient Educa- tion and Counseling. 52(3): 315–323.

Schopp A, Valimaki M, Leino-Kilpi H, Dassen T, Gasull M, Lemonidou C, Scott PA, Arndt M, Kaljonen A. 2003. Perceptions of informed consent in the care of elderly people in five European countries. Nursing Ethics: An International Journal for Health Care Pro- fessionals. 10(1): 48–57.

Scott TL, Gazmararian JA, Williams MV, Baker DW. 2002. Health literacy and preventive health care use among Medicare enrollees in a managed care organization. Medical Care. 40(5): 395–404.

Scrimshaw SC, Hurtado E. 1987. Rapid Assessment Procedures for Nutrition and Primary Health Care: Anthropological Approaches to Improving Program Effectiveness. Los Angeles, CA: University of California at Los Angeles, Latin American Center.

Shook EV. 1985. Ho’oponopono: Contemporary Uses of a Hawaiian Problem-solving Pro- cess. Honolulu, HI: East-West Center, University of Hawaii Press.

Shortell SM, Kaluzny AD, Editors. 2000. Health Care Management: Organization, Design, and Behavior. 4th edition. Albany, NY: Delmar Publishers.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

238 HEALTH LITERACY

Smith H, Gooding S, Brown R, Frew A. 1998. Evaluation of readability and accuracy of information leaflets in general practice for patients with asthma. British Medical Jour- nal. 317(7153): 264–265.

Sorrell JM. 1991. Effects of writing/speaking on comprehension of information for informed consent. Western Journal of Nursing Research. 13(1): 110–122.

Street RL Jr. 1991. Information-giving in medical consultations: The influence of patients’ communicative styles and personal characteristics. Social Science and Medicine. 32(5): 541–548.

Sugarman J, McCrory DC, Hubal RC. 1998. Getting meaningful informed consent from older adults: A structured literature review of empirical research. Journal of the Ameri- can Geriatrics Society. 46(4): 517–524.

Sugarman J, Kurtzberg J, Box TL, Horner RD. 2002. Optimization of informed consent for umbilical cord blood banking. American Journal of Obstetrics and Gynecology. 187(6): 1642–1646.

Tait AR, Voepel-Lewis T, Malviya S. 2003. Do they understand? (Part II): Assent of children participating in clinical anesthesia and surgery research. Anesthesiology. 98(3): 609– 614.

Tarnowski KJ, Allen DM, Mayhall C, Kelly PA. 1990. Readability of pediatric biomedical research informed consent forms. Pediatrics. 85(1): 58–62.

Tindall B, Forde S, Ross MW, Goldstein D, Barker S, Cooper DA. 1994. Effects of two formats of informed consent on knowledge amongst persons with advanced HIV disease in a clinical trial of didanosine. Patient Education and Counseling. 24(3): 261–266.

Triantafyllou K, Stanciu C, Kruse A, Malfertheiner P, Axon A, Ladas SD, European Society of Gastrointestinal Endoscopy. 2002. Informed consent for gastrointestinal endoscopy: A 2002 ESGE survey. Digestive Diseases. 20(3–4): 280–3.

USP. 2003. Drug Information: USP Pictograms. [Online]. Available: http://www.usp.org/ drugInformation/pictograms/. [accessed: June, 2003].

Vinicor F, Burton B, Foster B, Eastman R. 2000. Healthy people 2010: Diabetes. Diabetes Care. 23(6): 853–855.

Vohra HA, Ledsham J, Vohra H, Patel RL. 2003. Issues concerning consent in patients undergoing cardiac surgery—The need for patient-directed improvements: A UK per- spective. Cardiovascular Surgery. 11(1): 64–69.

Von Korff M, Gruman J, Schaefer J, Curry SJ, Wagner EH. 1997. Collaborative management of chronic illness. Annals of Internal Medicine. 127(12): 1097–1102.

Wagner EH. 1995. Population-based management of diabetes care. Patient Education and Counseling. 26(1–3): 225–230.

Wagner EH, Glasgow RE, Davis C, Bonomi AE, Provost L, McCulloch D, Carver P, Sixta C. 2001. Quality improvement in chronic illness care: A collaborative approach. The Joint Commission Journal on Quality Improvement. 27(2): 63–80.

Wallerstein N. 1992. Health and safety education for workers with low-literacy or limited- English skills. American Journal of Industrial Medicine. 22(5): 751–65.

Warde C. 2001. Time is of the essence. Journal of General Internal Medicine. 16(10): 712– 713.

Watters EK. 2003. Literacy for health: An interdisciplinary model. Journal of Transcultural Nursing. 14(1): 48–54.

Williams BF, French JK, White HD, HERO-2 consent substudy investigators. 2003. Informed consent during the clinical emergency of acute myocardial infarction (HERO-2 consent substudy): A prospective observational study. Lancet. 361(9361): 918–922.

Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K, Coates WC, Nurss JR. 1995. Inadequate functional health literacy among patients at two public hospitals. Journal of the American Medical Association. 274(21): 1677–1682.

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Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. 1998a. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 114(4): 1008–1015.

Williams MV, Baker DW, Parker RM, Nurss JR. 1998b. Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hyper- tension and diabetes. Archives of Internal Medicine. 158(2): 166–172.

Wydra EW. 2001. The effectiveness of a self-care management interactive multimedia mod- ule. Oncology Nursing Forum. 28(9): 1399–1407.

Young DR, Hooker DT, Freeberg FE. 1990. Informed consent documents: increasing compre- hension by reducing reading level. IRB: A Review of Human Subjects Research. 12(3): 1–5.

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7

A Vision for a Health-Literate America

My best advice to others with poor reading skills is to not presume but to ask questions. Poor readers need to take responsibility also. We need to learn how to ask questions better. I would recommend more training for us. Re- member, we [adult learners] want to be part of the solution.

My best advice to health providers is to think of us as partners. Treat us like partners. Tell us that you need our help too. You might think about setting up training sessions to help staff know how to ask questions that get the best answers. Make sure compassion is part of the training and include us in the training. We can teach along with you. When talking with us, use pictures (those drawn by you are just as good as the fancy ones—even stick figures). Use plain language not medicalese.

Personal story graciously provided by Toni Cordell, Adult Learner and Lit- eracy Advocate, as told to C.D. Meade, September 2003.

The evidence and judgment presented in this report indicate how important improving heath literacy is to improving the health of individuals and populations. This is why the Institute of Medicine

identified improving health literacy as one of two cross-cutting issues need- ing attention in its recent Priority Areas for National Action in Quality Improvement (IOM, 2003), and why the Surgeon General recently stated that “health literacy can save lives, save money, and improve the health and

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VISION FOR A HEALTH-LITERATE AMERICA 241

well-being of millions of Americans . . . health literacy is the currency of success for everything I am doing as Surgeon General” (Carmona, 2003).

As the report also indicates, much more needs to be known about the causal pathways between education and health and the more specific role of literacy, as well as the discrete contribution of health literacy. As a result, we will then be in a position to understand which interventions and ap- proaches are the most appropriate and effective. This Committee believes that a health-literate America is an achievable goal. We envisage a society in which people have the skills that they need to obtain, interpret, and use health information effectively, and within which a wide variety of health systems and institutions take responsibility for providing clear communica- tion and adequate support to facilitate health-promoting actions. Specifi- cally, we believe a health-literate America would be a society in which:

• everyone has the opportunity to improve their health literacy. • everyone has the opportunity to use reliable, understandable infor-

mation that could make a difference in their overall well-being, including everyday behaviors such as how they eat, whether they exercise, and whether they get checkups.

• health and science content would be basic parts of K-12 curricula, • people are able to accurately assess the credibility of health infor-

mation presented by health advocate, commercial, and new media sources. • there is monitoring and accountability for health literacy policies

and practices. • public health alerts, vital to the health of the nation, are presented

in everyday terms so that people can take needed action. • the cultural contexts of diverse peoples, including those from vari-

ous cultural groups and non-English-speaking peoples, are integrated into all health information.

• health practitioners communicate clearly during all interactions with their patients, using everyday vocabulary.

• there is ample time for discussions between patients and health- care providers.

• patients feel free and comfortable to ask questions as part of the healing relationship.

• rights and responsibilities in relation to health and health care are presented or written in clear, everyday terms so that people can take needed action.

• informed consent documents used in health care are developed so that all people can give or withhold consent based on information they need and understand.

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242 HEALTH LITERACY

While achieving this vision is a profound challenge, we believe that significant progress can and must be made over the coming years so that the potential of optimal health can benefit all individuals and populations in our society.

REFERENCES

Carmona RH. 2003. Health Literacy in America: The Role of Health Care Professionals. Prepared Remarks given at the American Medical Association House of Delegates Meet- ing. Saturday, June 14, 2003. [Online]. Available: http://www.surgeongeneral.gov/news/ speeches/ama061403.htm [accessed: August 2003].

IOM (Institute of Medicine). 2003. Priority Areas for National Action: Transforming Health- care Quality. Adams K, Corrigan JM, Editors. Washington, DC: The National Acad- emies Press.

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243

A

Data Sources and Methods

In order to respond to the study charge, several steps were undertaken to define the scope of the problem of limited health literacy, identify ob- stacles to creating a health-literate public, assess the approaches that

have been attempted, and identify goals for health literacy efforts. Sources of data and information included the expertise of the committee members, literature reviews and Internet searches of principal concepts, informal in- terviews, commissioned works, hosting of several public workshops, and other invited presentations.

STUDY COMMITTEE

An 11-member study committee was convened to assess available data and respond to the study charge. The committee included members with expertise in public health, primary medical care, health communication, sociology, anthropology, adult literacy education, and K-12 education. The committee convened for six 2-day meetings on October 21–22, 2002; De- cember 10–11, 2002; February 13–14, 2003; April 29–30, 2003; June 16– 17, 2003; and September 11–12, 2003. Biographies of individual commit- tee members appear in Appendix D.

LITERATURE REVIEW

The committee conducted extensive literature reviews and Internet searches regarding health literacy and related topics. The literature reviewed

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244 HEALTH LITERACY

in this report represents diverse fields and academic disciplines. In particu- lar, Institute of Medicine (IOM) staff used in-house databases, including Academic Premier Search, Medline, ERIC,1 PsychInfo, Sociological Ab- stracts, and CINAHL2 to identify relevant peer-reviewed literature. Key- word searches include the following: “health literacy,” “literacy and health,” and “reading and health.” Additional studies for consideration were identified through testimony to the committee by experts in the field.

PUBLIC WORKSHOPS

The study committee hosted three 1-day public workshops in order to obtain input from various stakeholders, consumers, and researchers. These workshops were held in conjunction with three of the six committee meet- ings mentioned above.

The first public workshop of the committee was held on December 10– 11, 2002 in Washington, DC. This workshop focused on health literacy- related activities in federal government agencies, academia, and other rel- evant organizations. Michael Pignone, M.D., M.P.H., Assistant Professor of Medicine at the University of North Carolina, Chapel Hill, School of Medicine, presented information about an ongoing research project spon- sored by the Agency for Health Care Research and Quality intended to review the evidence base of health literacy research. Arlene S. Bierman, M.D., M.S., from the Center of Outcomes and Effectiveness Research, Agency for Healthcare Research and Quality, spoke about health dispari- ties and health literacy. Lawrence J. Fine, M.D., Dr. P.H., of the Office of Behavioral and Social Science Research at the National Institutes of Health, discussed how health literacy relates to other areas in health such as health disparities, behavioral change, and socioeconomic determinants of health such as education. Cynthia Baur, Ph.D., of the U.S. Department of Health and Human Services, spoke about federal involvement in health literacy efforts and how to leverage existing work that is relevant to the field. Anthony Tirone, J.D., from the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), discussed some of the work of JCAHO that has implications for how health systems respond to health literacy. Marisa Scala, M.G.S., from the Center for Medicare Education of the American Association of Homes and Services for the Aging, talked about the specific needs of the Medicare population as they relate to health lit- eracy. Karen Lechter, J.D., Ph.D., from the Center for Drug Evaluation and Research of the U.S. Food and Drug Administration (FDA) provided an

1Educational Resources Information Center. 2Cumulative Index to Nursing and Allied Health Literature.

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APPENDIX A 245

overview of the activities of the FDA and their relevance to health literacy. Lauren Schwartz, M.P.H., from the New York City Poison Control Center shared background about and lessons from a program educating adult learners about medications. Linda Morse, R.N., M.A., from the New Jersey Office of Academic and Professional Standards discussed current activity in the educational sector to improve health literacy, including efforts specific to New Jersey, such as the New Jersey Core Curriculum Content Standards for Comprehensive Health and Physical Education, which are currently being implemented. Judy A. Shea, Ph.D., from the University of Pennsylva- nia School of Medicine, shared findings about a recent research project looking at the interplay between health literacy and patient satisfaction with different modes of health-related communication. Finally, Tina Tucker, M.A., M.Ed., RTC, from the National Program in Literacy, American Foun- dation for the Blind, discussed the health needs and desires of individuals who are visually impaired and low literate. The agenda for this workshop is shown in Box A-1.

The third meeting of the committee was held on February 13–14, 2003, at the Arnold and Mabel Beckman Center of the National Academies in Irvine, California, and a public workshop was held in conjunction with this meeting. On the afternoon of February 13, the committee heard from rep- resentatives of consumer and advocacy groups, as well as several experts in the areas of literacy, communication, and chronic diseases. Dean Schillinger, M.D., from the University of California–San Francisco spoke about the relationships between care for patients with chronic diseases, health lit- eracy, and quality of care, with a specific emphasis on the role of patient– physician communication in determining quality of care. Tetine Sentell, M.A., of the University of California–Berkeley presented new analyses of data from the National Adult Literary Survey. Susan M. Shinagawa, from the Asian and Pacific Islander National Cancer Survivors Network, and Heng L. Foong, of the Pacific Asian Language Services for Health, high- lighted the most critical health literacy issues facing Asian Americans and Pacific Islanders today, with an emphasis on issues of health and doctor– patient communication in populations with limited English that represent native speakers of diverse languages. Rita Hargrave, M.D., of the Univer- sity of California–Davis and Veterans Medical Center of Northern Califor- nia, discussed mental health care, ethnicity, and health literacy, and the influence of physician and patient communication styles and preferences. Alvin Billie, of the Family Learning Center and the Gathering Place in New Mexico, discussed the unique health literacy issues facing Native Ameri- cans, and addressed the effect of large cultural differences on doctor– patient communication, as well as approaches to the problems created by these cultural differences. Francis Prado and Francisco Para, from Latino Health Access based in Santa Ana, California, described health literacy

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246 HEALTH LITERACY

challenges in Latin American populations based on their experiences as community health workers, emphasizing how the different experiences of patients and doctors affect the meaning in their communication, resulting in less effective health care. The agenda for this meeting is presented in Box A-2.

At the fourth meeting of the committee, a public workshop was held with representatives of health-care system organizations and consumer groups, as well as experts on the research base on health literacy and on the legal issues surrounding health literacy. This workshop took place on April

BOX A-1 First Workshop Hosted by the Committee on Health Literacy

Date: December 10–11, 2003 Location: Keck Center of the National Academies

500 5th Street, NW Washington, D.C.

December 10, 2003

1:00 p.m. Report from the AHRQ Evidence-Based Practice Center Report on Health Literacy

Michael Pignone, M.D., M.P.H. Assistant Professor of Medicine, University of North Carolina at

Chapel Hill School of Medicine

1:20 p.m. Health Literacy and Health Disparities: Assessing Health Outcomes and Quality of Care

Arlene S. Bierman, M.D., M.S. Senior Research Physician, Center of Outcomes and Effectiveness

Research, Agency for Healthcare Research and Quality

1:50 p.m. Education Pathways to Health: Health Literacy Lawrence J. Fine, M.D., Dr.Ph., Medical Advisor Office of Behavioral and Social Science Research, National

Institutes of Health

2: 00 p.m. The Federal Sector and Health Literacy Cynthia Baur, Ph.D. Health Communication and e-Health Advisor, U.S. Department of

Health and Human Services

2:30 p.m. Activities of the Joint Commission to Improve Health Literacy Anthony Tirone, J.D. Director of Federal Relations, Joint Commission on Accreditation of

Healthcare Organizations

3:00 p.m. Break

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APPENDIX A 247

29, 2003, at the Keck Center of the National Academies in Washington, DC. Michael Pignone, Ph.D., of the University of North Carolina at Chapel Hill presented updated information about an ongoing study on the health literacy research database sponsored by the Agency for Healthcare Re- search and Quality. Julie Hudman, Ph.D., from the Kaiser Commission on Medicaid and the Uninsured of the Henry J. Kaiser Family Foundation spoke about the health literacy issues confronting Medicaid and low-in- come individuals. Joanne Schwartzberg, M.D., of the American Medical Association (AMA), discussed the ongoing efforts of the AMA to educate

3:15 p.m. Linking Health Literacy and Medicare Education Marisa Scala, M.G.S. Executive Director, Center for Medicare Education, American

Association of Homes and Services for the Aging

3:45 p.m. Patient Information Activities at the FDA Karen Lechter, J.D., Ph.D. Social Science Analyst, Center for Drug Evaluation and Research,

U.S. Food and Drug Administration

4:15 p.m. General Discussion and Public Comment

5:00 p.m. Adjourn

December 11, 2003

8:30 a.m. Health Education Literacy Program: A Medicine Safety Program for Adult Learners

Lauren Schwartz, M.P.H. Community Health Educator, New York City Poison Control Center

9:15 a.m. Improving Health Literacy: An Educational Response to a Public Health Problem

Linda Morse Director, New Jersey Office of Academic and Professional Standards

10:00 a.m. Development of Patient Satisfaction Survey Materials for Low-Literacy Consumers

Judy A. Shea University of Pennsylvania School of Medicine

10:45 a.m. Health Management Solutions for Adults Who Are Visually Impaired and Have Low Literacy Skills

Tina Tucker American Foundation for the Blind

11:30 a.m. Discussion

12:30 a.m. Adjourn

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248 HEALTH LITERACY

health professionals about health literacy. Frank M. McClellan, J.D., a professor at the Temple University James E. Beasley School of Law, pro- vided background on the legal precendents and legal and ethical implica- tions of health literacy and informed consent. Joyce Dubow, M.U.P., of

BOX A-2 Second Workshop Hosted by the

Committee on Health Literacy

Date: February 13, 2003 Location: Arnold and Mabel Beckman Center of the National Academies,

Irvine, CA

3:00 p.m. Literacy and Chronic Disease Care: New Research Insights and Reflections on Quality Standards

Dean Schillinger, M.D. Associate Professor of Medicine, University of California–San

Francisco, San Francisco General Hospital Medical Center

3:45 p.m. Relationships Between Literacy, Race, Age, Education, and Health in a National Sample: An Extension of NALS Analyses

Tetine Sentell, M.A. Ph.D. Candidate, University of California, Berkeley

4:00 p.m. Health Literacy Concerns for Asian Americans & Pacific Islanders: Challenges and Opportunities

Susan M. Shinagawa Patient Advocate and Founder, Asian and Pacific Islander National

Cancer Survivors Network

Heng L. Foong Patient Advocate and Program Director, Pacific Asian Language

Services for Health

4:15 p.m. The Interplay of Ethnicity and Health Literacy in Mental Health- care

Rita Hargrave, M.D. Assistant Professor of Psychiatry, Department of Psychiatry,

University of California, Davis, Veterans Medical Center of Northern California System of Clinics

4:30 p.m. Health and Literacy—A Native American Point of View Alvin Billie Program Manager, The Gathering Place, Thoreau, NM

4:45 p.m. Health Care Barriers in the Latino Community of Orange County Francis Prado, Francisco Para Health Educators and Promotoras, Latino Health Access

5:00 p.m. Discussion

5:30 p.m. Adjourn

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APPENDIX A 249

AARP, spoke about health literacy issues related to Medicare beneficiaries. L. Natalie Carroll, M.D., of the National Medical Association, presented information on African Americans and health literacy, and described the positions and efforts of the National Medical Association in the area. Fi- nally, Eduardo Crespi, R.N., from Centro Latino de Salud in Missouri, discussed health literacy needs of the Latin American population served by Centro Latino, and described some of the programs available to address those needs. The agenda for this workshop is presented in Box A-3.

BOX A-3 Third Workshop Hosted by the Committee on Health Literacy

Date: April 29, 2003 Location: Keck Center of the National Academies, Washington, DC

2:00 p.m. Understanding the Medicaid and Low-Income Population: Implications for Health Literacy

Julie Hudman, Ph.D. Associate Director, Kaiser Commission on Medicaid and the

Uninsured, Henry J. Kaiser Family Foundation

2:30 p.m. Low Health Literacy: Increasing Physician Awareness of an Emerging Issue

Joanne Schwartzberg, M.D. Director of Aging and Community Health, American Medical

Association

3:00 p.m. Legal Implications of Health Literacy Frank M. McClellan, J.D. I. Herman Stern Professor of Law, Temple University James E.

Beasley School of Law

3:30 p.m. Break

3:45 p.m. Health Literacy Among Medicare Beneficiaries Joyce Dubow, M.U.P. Senior Policy Advisor, Public Policy Institute, AARP

4:15 p.m. African Americans and Health Literacy L. Natalie Carroll, M.D. President, National Medical Association

4:45 p.m. Health Literacy and the Midwestern Latino Community Eduardo Crespi, R.N. Executive Director, Centro Latino de Salud, Columbia, MO

5:15 p.m. Discussion

5:45 p.m. Adjourn

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250 HEALTH LITERACY

COMMISSIONED PAPERS AND BACKGROUND INFORMATION

The committee commissioned several papers and research projects in order to fill gaps in the available evidence base. Three of the papers can be found in Appendix B, and input from other consultants has been integrated into the report. The committee commissioned work from Terry Davis of Louisiana State University, Julie Gazmararian of Emory University, David H. Howard of Emory University, Frank McClellan of Temple University School of Law, Dean Schillinger of University of California–San Francisco, and Barry D. Weiss of the University of Arizona College of Medicine. Davis and Gazmararian collaborated to examine some promising approaches to health literacy; background and methodology of their work is discussed further below. Howard was commissioned to look at the economic implica- tions of limited health literacy in a Medicare population. His paper is included in Appendix B, and provides important information for the discus- sion in Chapter 3 concerning the associations of limited health literacy. McClellan spoke to the committee and provided information about legal issues that are important to consider with health literacy. This information provides the basis for the section on health law that appears in Chapter 6. Schillinger examined chronic disease care for patients with limited health literacy from a health systems perspective. His work on informed consent is cited in Chapter 6, and can be found in Appendix B. Weiss provided a piece considering the different stakeholders in the health literacy discussion; this work can also be found in Appendix B.

This section presents the methodology used for two of the research activities commissioned by the committee from outside consultants that are not separately presented in a paper: (1) a review of approaches to health literacy not found in the published literature, and (2) a compilation of the federal funding for health literacy projects over the past 10 years.

Approaches to Improving Health Literacy: Lessons from the Field

The committee commissioned a project from Terry Davis, M.D., Loui- siana State University Health Sciences Center, and Julie Gazmararian, Ph.D., Emory University, to look at approaches to improving health literacy that are currently being used and may not be reflected in the peer-reviewed literature. Findings from this project are discussed in Chapter 6. Drs. Davis and Gazmararian, and IOM staff, identified key individuals or organiza- tions that should be contacted to inquire about health literacy activities in which they were involved. The selection process was not intended to result in a complete survey of approaches to health literacy, but rather to identify a sample of key organizations that could make a difference in the field of health literacy. The types of organizations that were targeted included fed-

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APPENDIX A 251

eral and state government agencies, pharmaceutical companies, national organizations, foundations, and local service providers. IOM staff identi- fied a contact person to respond from each organization. Individuals iden- tified for possible participation in the survey were those who were aware of health literacy. We also decided to elicit information on health literacy activities from the National Institute for Literacy (NIFL)-health listserv (see www.nifl.gov for more information).

Terry Davis and Julie Gazmararian developed a 5-minute, 15-question, web-based survey to send to selected individuals. This instrument was de- veloped on the basis of a previous survey by the Council of State Govern- ments to assess health literacy activities at the state level (Matthews and Sewell, 2002). Information collected included: whether health literacy is considered in program development and service activities; the degree to which organizations follow health literacy principles in their programs; target audience(s) for activities; whether organizations pilot test materials for comprehension or cultural competence; evaluation of materials; which activities people associate with health literacy and lessons learned.

The Internet service www.zoomerang.com was used to create the web- based survey because it provides low-cost, web-based survey implementa- tion tools. IOM staff sent an e-mail message with a web link to the original list of 101 individuals identified, and to the NIFL-health listserv, which has 568 members. The survey was open for 10 days. No follow-up reminders were sent to the designated individuals or the listserv.

Figure A-1 outlines the response to the survey. Of the 101 individuals e- mailed, 7 e-mails were undeliverable, leaving 94 individuals directly con- tacted. Including respondents from the listserv, we received completed sur- veys from 95 individuals; 33 of these were from the initial list of individuals, and 62 were from the listserv.

FIGURE A-1 Response to web-based survey.

E-mail sent to targeted individuals (n=101)

Survey posted on list serve (n=568)

7 e-mails undeliverable

33 respondents 62 responded

95 Responses

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252 HEALTH LITERACY

Respondents came from state and federal government agencies, asso- ciations, foundations, health-care organizations, institutes of higher educa- tion, community/advocacy groups, adult education programs, and literacy businesses (see Table A-1).

TABLE A-1 Summary of Respondents and Nonrespondents to Survey

E-mailed Survey Respondents NIFL Listserv Respondents

Asian American Network for Cancer American Institutes for Research Awareness, Research and Training American Society on Aging

American Academy of Family Physicians Ball Memorial Family Practice Residency Foundation Blue Cross Blue Shield of Michigan

American Academy of Neurology Bronson Healthcare Group American Medical Association Brown University, Center for Agency for Toxic Substances and Disease Environmental Studies

Registry (CDC) Butler University–College of Pharmacy California HealthCare Foundation Cambridge Health Alliance California Literacy, Inc. Centers for Disease Control and Center for Medicare Education Prevention Centers for Disease Control and Center for Health Care Strategies

Prevention CHOICE Regional Health Network Centro Latino de Salud Clear Language Group Food and Drug Administration Dartmouth-Hitchcock Medical Center Martinez VA Outpatient Clinic Eastern Massachusetts Literacy Council Mettger Communications EasyRead Copywriting National Cancer Institute Emory University School of Medicine/ National Program Office, Grady Hospital

Hablamos Juntos En Memphis, Hablamos Juntos National Cancer Institute’s Cancer Environmental Toxicology Program,

Information Service of New York Maine Bureau of Health National Institute on Deafness and Other Family Health Research

Communication Disorders (NIH) Georgia Department of Technical & New York City Poison Control Center Adult Education Pfizer, Inc. Hablamos Juntos The Gathering Place Harris School of Nursing, Texas U.S. Department of Health and Human Christian University

Services Health Literacy Center, University of U.S. Food and Drug Administration, New England

Los Angeles District Health Literacy Consulting University of North Texas Health Science Home Health VNA

Center Health Resources and Services University of Virginia School of Medicine Administration

Inova Health System Kootenai Medical Center Medical Library Literacy Assistance Center Literacy Volunteers of Santa Fe

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APPENDIX A 253

Massachusetts Department of Public Health

Mayfield Adult Basic and Literacy Education

Molina Healthcare, Inc. National Alliance for the Mentally Ill

(NAMI) National Institutes of Health National Marrow Donor Program National Cancer Institute—Office of

Education and Special Initiatives Neighborhood Health Plan of Rhode

Island National Institute of Neurological

Disorders and Stroke (NIH) New York City Department of Health

and Mental Hygiene Parma Adult Basic and Literacy

Education Queens Library Rancho Los Amigos National

Rehabilitation Center Saint Eugene Medical Center Santa Clara Valley Medical Center Section of Patient Education Mayo Clinic

Rochester Southwest Washington Medical Center St. Joseph Regional Health Center Temple University Health System The Catholic University of America

School of Nursing The Ohio State University The Robert Wood Johnson Foundation University of Texas University of North Carolina School of

Medicine University of Pennsylvania University of South Carolina School of

Medicine University of Tennessee Extension Service University of Texas Health Science

Center Virginia Adult Learning Resource Center Vision Literacy Wayne State University

NOTE: The same organization can be found in different categories because separate individu- als may or may not have completed the survey.

TABLE A-1 Continued

E-mailed Survey Respondents NIFL Listserv Respondents

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254 HEALTH LITERACY

Federal Funding for Health Literacy over a 10-Year Period

Patrick Weld, M.S.W., M.P.A., L.G.S.W., of the National Cancer Insti- tute (NCI), with the assistance of K. Vish Visnawath, Ph.D., also of NCI, provided the committee with a table of federal funding of health literacy- related projects over the past 10 years. The data were derived from a search of the NIH CRISP database; searches for each fiscal year from 1993 to 2002 used the following operands: “health literacy,” “health and literacy,” “health and readability,” and “literacy and readability.” The grants re- trieved were examined for relevance to the field of health literacy, and financial information was obtained.

Results were then downloaded into Portfolio Management Application software developed by Department of Cancer Control and Population Sci- ence of the National Institutes of Health for identification and deletion of duplicate grants, and linkage to financial data. A total of 906 grants for the 10-year period were identified. Because of a technology change in 1995– 1996, 229 of the grants could not be linked to financial data. Thus, the early years of the search results (1993–1996) contain missing financial data. While Drs. Weld and Viswanath were able to identify all of the missing grants, further work to access the financial data for those grants was not successful.

The information for the remaining 667 grants available was down- loaded into an Excel spreadsheet for further manipulation. The awarded grants were identified, and unawarded grants were excluded, bringing the final count of grants to 565. This information has been compiled into yearly federal grant funding (new and continuing grants) over a 10-year period, and is presented in Chapter 6.

REFERENCE

Matthews TL, Sewell JC. 2002. State Official’s Guide to Health Literacy. Lexington, KY: The Council of State Governments.

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255

B

Commissioned Papers

CONTENTS

The Relationship Between Health Literacy and Medical Costs David H. Howard 256

Improving Chronic Disease Care for Populations with Limited Health Literacy

Dean Schillinger 267

Outside the Clinician–Patient Relationship: A Call to Action for Health Literacy

Barry D. Weiss 285

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256 HEALTH LITERACY

The Relationship Between Health Literacy and Medical Costs

David H. Howard, Ph.D.

INTRODUCTION

Past research has shown that individuals with low levels of health literacy are more likely to be hospitalized and have worse disease outcomes (Baker et al., 1998, 2002; Schillinger et al., 2002). The major obstacle to extending these results by examining the relationship between health lit- eracy and spending is the lack of data containing measures of both. Some insight about the impact of health literacy on costs can be gleaned from studies that examine the impact of years of schooling on medical costs, but health literacy is a fundamentally different concept from educational attain- ment (Davis et al., 1994; Stedman and Kaestle, 1991). At least one study has examined the association between general literacy and costs (Weiss et al., 1994). It found no relationship, though the sample size was small (N = 402) and not representative of the overall U.S. population (over half the study subjects qualified for Medicaid because of disability). Furthermore, inpatient and outpatient costs were not analyzed separately and the analysis did not control for confounding patient characteristics. Another paper by the same author (Weiss) shows large differences in costs by grade reading level in a Medicaid population (Weiss, 1999), but descriptions of the meth- ods and data are not available. This study examines the relationship be- tween health literacy and costs using a unique dataset combining cost infor- mation from an administrative claims file and a health literacy measure from a beneficiary survey. Multivariate techniques are used to adjust for underlying differences in respondents’ characteristics.

Data Description

Health literacy data were collected as part of a survey of persons enroll- ing in a Prudential Medicare health maintenance organization between December of 1996 and August of 1997 in one of four locations: Cleveland, Ohio; Houston, Texas; South Florida (including Fort Lauderdale, Miami, and nearby areas); and Tampa, Florida. New Prudential Medicare members were contacted three months after enrollment, and those meeting the eligi- bility criterion were asked to complete an in-person survey. In order to be included in the study, members had to be comfortable speaking either English or Spanish, living in the community, and possess adequate visual and cognitive function. The survey included the Short Test of Functional

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APPENDIX B 257

Health Literacy in Adults (S-TOFHLA) (Parker et al., 1995), a series of questions designed to measure health literacy. A detailed description of the survey and data has been published elsewhere (Gazmararian et al., 1999).

Prudential administrative claims databases were used to compute an- nual health expenditures from the date of enrollment for all eligible enroll- ees by site of service (inpatient, outpatient, emergency room, and phar- macy). The claims database includes costs for all medical services used by enrollees associated with insurance reimbursement. The cost for each ser- vice is the sum of Prudential’s reimbursement and the beneficiary’s out-of- pocket payment.

Table B-1 presents evidence on how closely the study sample represents the U.S. population of health-care consumers. The first column of the table presents summary statistics for the 3,260 responders, the second for the 3,245 nonresponders, and the third for participants of comparable age in the household component of the 1997 Medical Expenditure Panel Survey (MEPS) (for a description see Cohen et al., 1996–1997). Differences be- tween samples were assessed using one-way analysis of variance (ANOVA) tests by group for three-sample comparisons of continuous variables and chi-squared tests for two-sample comparisons of binary variables. ANOVA tests for differences in the cost variables were performed on the natural

TABLE B-1 Representativeness of the Study Sample

Prudential

Responders Nonresponders MEPS 97 P-value

Inpatient costs $5,321 $4,512 $2,276 <0.01 Outpatient costs $1,837 $1,547 $1,203 <0.01 ER costs $131 $115 $124 <0.01 Pharmacy costs $677 $655 $743 <0.01

Age 72.8±6.4 73.3±6.8 74.6±6.8 <0.01

Schooling 12 years 34% no data 31% 0.03 >12 years 31% no data 28% 0.03

Need help with ADLs 5% no data 9% <0.01

Need help with IADLs 31% no data 16% <0.01

N 3,260 3,245 3,833

NOTE: Age row reports mean ± standard deviation.

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258 HEALTH LITERACY

logarithm of costs to make the variable conform to the normality assump- tion underlying the F-test.

Compared to nonresponders and the MEPS sample, responders in- curred higher inpatient, outpatient, emergency room, and pharmacy expen- ditures. There were also small differences in average age (0.5 years) and the proportion with more than 12 years of schooling. Compared to MEPS respondents, Prudential respondents were less likely to need assistance with at least one activity of daily living but more likely to need assistance with at least one instrumental activity of daily living. Differences in survey admin- istration may account for some of these inconsistencies (Wiener et al., 1990).

Spending differences between the Prudential population and the MEPS sample, which is nationally representative, may reflect the fact that study participants reside primarily in large urban areas, where reimbursement rates tend to be higher. South Florida, one of the locales from which re- spondents were drawn, is known to have the highest level of per beneficiary Medicare spending in the country (Center for Evaluative Clinical Sciences, 1998). The study population may also differ in health status. While Medi- care managed care plans tend to enroll a healthier mix of beneficiaries compared to the traditional Medicare program (Hellinger and Wong, 2000), managed care plans that offer generous prescription drug coverage or re- quire little in the way of cost-sharing may attract beneficiaries with chronic conditions. A final explanation for the cost differences is that MEPS fails to capture a large portion of spending for Medicare beneficiaries due to re- strictive sampling criteria (Selden et al., 2001).

Raw S-TOFLHA score were converted to a discreet categorical variable for purposes of analysis (Baker et al., 1999). Persons scoring 67 and above on the S-TOFHLA were classified as having “adequate” health literacy and those scoring 66 or below were classified as having “inadequate” health literacy. Previous studies have distinguished between a “marginal” health literacy group, with scores between 56 and 66, and an “inadequate” group, with scores 55 or below (Baker et al., 2000). This study combined data from the marginal and inadequate groups to increase statistical power, as no significant cost differences were found between these two groups in preliminary analyses.

Table B-2 displays detailed summary statistics by health literacy level for the responders. Differences between groups were assessed using chi- squared tests for binary variables and t-tests for continuous variables. Per- sons with inadequate health literacy had lower incomes and fewer years of schooling. More Caucasian subjects had adequate than inadequate health literacy, while more African Americans and Spanish-speaking Hispanics had inadequate health literacy. Physical and mental quality-of-life, as mea-

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APPENDIX B 259

sured by SF-12 scores (Ware et al., 1996) and chronic condition indicators, were higher in those with inadequate health literacy, indicating worse health status overall. Somewhat surprisingly, persons with inadequate health lit- eracy are less likely to smoke or have smoked previously and less likely to consume alcohol.

TABLE B-2 Characteristics of the Study Sample

Literacy

Adequate Inadequate P-value

Age 71.6±5.6 75.1±6.9 <0.01 Female 58% 57% n.s. Race

White 84% 61% <0.01 Black 7% 22% <0.01 Hispanic, English speaking 2% 2% n.s. Hispanic, Spanish speaking 7% 14% <0.01 Other 1% 1% n.s.

Income No response 14% 20% <0.01 <$10K 12% 29% <0.0 $10K–$25K 50% 42% <0.01 >$25K 24% 9% <0.01

Schooling <8 years 7% 36% <0.01 9–11 years 15% 25% <0.01 12 years 38% 25% <0.01 >12 years 40% 14% <0.01

Smoking Never 38% 55% <0.01 Former 49% 43% <0.01 Current 13% 12% n.s.

Drinking None 59% 72% <0.01 Light to Moderate 37% 26% <0.01 Heavy 4% 2% <0.01

Physical health SF-12 score 46.4±10.7 42.6±11.8 <0.01 Mental health SF-12 score 55.6±8.0 53.1±10.4 <0.01 Chronic conditions

High blood pressure 45% 50% 0.01 Arthritis 50% 58% <0.01 Depression 6% 5% n.s.

N 2,094 1,166

NOTE: Age and SF-12 score rows report mean ± standard deviation; n.s. = not significant.

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260 HEALTH LITERACY

Statistical Analysis

Costs by site of service were compared between the adequate and inad- equate health literacy groups using a two-part regression model of medical spending. The two-part model is the standard statistical framework in em- pirical health economics for measuring the impact an individual character- istic on medical costs (Diehr et al., 1999). It is designed to account for the unique distribution of medical spending found in most samples; a sizeable minority of individuals do not use medical care, many use small amounts, and a few individuals incur substantial medical bills that account for a large percentage of aggregate spending. Because of the highly skewed distribu- tion and presence of a large number of “0” values, standard statistical methods that assume the dependent variable is normally distributed yield inaccurate predictions of costs (Duan et al., 1983). The two-part model attempts to more accurately mimic the empirical distribution of medical spending by splitting the distribution into two parts and allowing the im- pact of independent variables, such as health literacy, on the probability of using medical care to be independent of their impact on the costs of medical care for those who use it.

The first stage of the model measures the probability of using medical care as a function of individual characteristics. Typically, logitistic or probit regression is used, where the dependent variable equals one if costs are strictly positive and zero otherwise. Probit (or probability unit) regression was used in this case. Health literacy was included as an independent variable, along with controls for age, sex, race, income, schooling, smok- ing, and alcohol consumption. The second stage of the model estimates the relationship between independent variables and costs among those who use medical care. Parameters are estimated via least squares regression, where the dependent variable is the logarithm of costs and the independent vari- ables are the same as in the first stage but the sample includes only individu- als who received care (i.e., those with strictly positive values for the relevant cost category).

Coefficient estimates for the two-part model are difficult to interpret in isolation, since the dependent variable of the second stage is in log, rather than constant, dollars, and it is customary to state results in terms of predicted spending levels. These are constructed by computing predicted probabilities from the first stage and then multiplying these predicted prob- abilities by the exponentiated second-stage predicted values and a “smear- ing factor” (Duan, 1983), which is needed to transform logged dollars back to constant dollars, and averaging the predicted spending levels over the entire sample. Transforming log to constant dollars via this method may produce misleading results if the variance of spending in the upper part of the distribution differs from the variance in the lower part (Manning, 1998).

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APPENDIX B 261

To address this issue, costs were also analyzed using the modified two-part model proposed by Mullahy (1998). In this model, the first stage is the same as in the standard two-part model, but the second stage is a nonlinear equation where cost equals the exponentiated sum of dependent variables and coefficients. This modified two-part model produced estimates within 5 percent of the predicted values from the standard two-part model. There- fore, only the results from the standard two-part model are presented below.

Two values are used to summarize the effect of a binary independent variable on spending. The first is the average predicted spending level with the variable indicating inadequate health literacy set equal to zero for every respondent; the second is the average predicted spending level with the health literacy variable set equal to one. Computed predicted values in this manner nets out the impact of observable individual characteristics, such as age, on spending.

Confidence intervals for predicted values were computed via simula- tion; the first- and second-stage coefficients were drawn from their respec- tive multivariate normal distributions and predicted values were computed following the steps outlined above. Repeating this routine 1,000 times produced distributions of predicted values, and the lower and upper bounds of the confidence intervals were set equal to the 2.5th percentiles and the 97.5th percentiles of the distributions, respectively.

Two models were estimated. The first (or basic) model includes con- trols for sex, age, income, schooling, smoking, and alcohol consumption. The second includes additional controls for physical and mental status (from the SF-12) and chronic conditions (high blood pressure, arthritis, and depression). This model does not include the 66 observations for which no physical or mental health SF-12 scores were reported, for a sample of 3,192 observations (= 3,260 – 66).

Results

Results from the two-part model are displayed in Table B-3. Inpatient costs are the largest component of total medical spending. Predicted inpa- tient spending for persons with inadequate health literacy is $993 higher than that of persons with adequate health literacy (difference in raw means: $1,859). Controlling for health status, predicted inpatient spending for persons with inadequate health literacy is about $450 higher than that of persons with adequate health literacy. The confidence intervals for inpa- tient spending from the basic model overlap slightly, while the confidence intervals for inpatient spending from the model that includes controls for health status display a greater degree of overlap. Examining separately the results from each stage of the two-part model helps illuminate the reasons

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262 HEALTH LITERACY

for spending differences. According to the first part of the two-part model for inpatient spending (results not shown; complete regression results are available from the author upon request), persons with inadequate health literacy are more likely to use inpatient services (p < 0.05), but, among those who used inpatient care, spending did not differ by health literacy status.

In contrast to the results for inpatient spending, the predicted outpa- tient spending level from the basic model for persons with adequate health literacy is higher than the predicted value for persons with inadequate health literacy. Predicted spending on emergency room care is lower for persons with adequate health literacy, while the predicted values for phar- macy spending from the basic model are comparable.

These results are shown in terms of total spending by the study sample in Table B-4. The first column shows predicted total spending under the assumption that the proportion of individuals with adequate health literacy is 64 percent, the actual proportion in the study sample. The second column shows predicted total spending under the assumption that the proportion of individuals with adequate health literacy is 100 percent, representing the maximum attainable level of health literacy in the population.

TABLE B-3 Predicted Health-Care Spending

Health Literacy

Cost Category Adequate Inadequate Difference

Basic Model

Inpatient $5,093 [$4,593 – $5,656] $6,086 [$5,424 – $6,806] $993 Outpatient $1,910 [$1,816 – $2,017] $1,795 [$1,681 – $1,914] ($115) Emergency room $110 [$97 – $124] $174 [$154 – $196] $64 Pharmacy $700 [664 – $739] $686 [$629 – $741] ($14)

Model with Controls for Health Status

Inpatient $5,352 [$4,832 – $5,945] $5,794 [$5,042 – $6,573] $442 Outpatient $1,989 [$1,881 – $2,118] $1,709 [$1,589 – $1,854] ($280) Emergency room $115 [$102 – $130] $166 [$144 – $193] $51 Pharmacy $778 [$729 – $832] $695 [$633 – $765] ($83)

NOTE: 95% confidence intervals are in brackets. Difference column displays the mean cost in the Inadequate column subtracted from the mean cost in the Adequate column. Negative values are in parentheses.

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APPENDIX B 263

Discussion

When assessing the causality of the results presented in Tables B-3 and B-4, it is important know whether health literacy, like ethnicity, is a con- stant, fixed characteristic of individuals or, like income, is associated with changes in health. Health literacy declines sharply with age in the study cohort (Baker et al., 2000), suggesting the latter. If so, then the relationship between health and health literacy is bidirectional; health literacy affects health and vice versa. To take an extreme example, an individual who experiences a severe stroke may lose the ability to read. It would be incor- rect in such a case to attribute the costs associated with post-stroke care to illiteracy, since the stroke caused illiteracy and not the other way around. Controlling for health status, as is done in the extended model, removes the effect of health on health literacy but also removes the effect of health literacy on disease incidence, leading to estimates of the impact of health literacy on spending that are systematically lower than the true effect. Declines in health literacy by age are unrelated to the onset of chronic conditions (Baker et al., 2000), suggesting that the bias due to reverse causality is not large. Nevertheless, future studies could address this issue by taking two or more measurements of health literacy from the same respondent at different points in time.

Another caveat to this study is that though the analysis included fairly extensive controls for individual characteristics, including income, educa- tion, smoking, and alcohol consumption, there still may be unobserved individual characteristics correlated with both health literacy and spending that confound the results. For example, if individuals with low health lit- eracy are also distrustful of the medical care system and are reluctant to seek medical attention, then the results will understate the impact of health literacy on costs.

TABLE B-4 In-Sample Prediction of Health Literacy and Total Costs

Percent with Adequate Literacy

64% (actual) 100% Difference

Inpatient 17,877,000 $16,616,000 $1,261,000 Outpatient 6,079,400 $6,227,300 ($147,900) Emergency room 438,480 $359,910 $78,570 Pharmacy $2,263,400 $2,277,700 ($14,300)

NOTE: Difference column displays the mean cost in the inadequate column subtracted from the mean cost in the adequate column. Negative values are in parentheses.

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264 HEALTH LITERACY

Some insight on the validity of these results may be gained by examin- ing differences in spending by site of service. Studies have shown that patients with low levels of health literacy receive fewer preventive services (Lindau et al., 2002; Scott et al., 2002), frequently fail to follow medication instructions (Andrus and Roth, 2002), and have worse health outcomes (Schillinger et al., 2002). The results of this study are consistent with these findings; individuals with inadequate health literacy make greater use of services designed to treat complications and advanced cases of disease, as indicated by higher spending for inpatient and emergency room care. Si- multaneously, they use fewer services designed to manage disease, as evi- denced by lower spending for outpatient care.

In conclusion, these results lend support to the hypothesis that indi- viduals with low levels of health literacy incur higher medical costs, but, because of the limitations discussed above, no definitive conclusions can be drawn from the analysis. Results were sensitive to the inclusion of controls for health status, and the confidence intervals around predicted inpatient spending from the basic model overlapped by a small amount. Although it is impossible to prove causality, future studies should take advantage of statistical methods, such as propensity score estimators (Coyte et al., 2000; Rubin, 1997), designed to estimate treatment effects efficiently and the diagnostic information contained on claims to determine if expenditures are higher for persons with the conditions thought to be most responsive to patient knowledge. Data with repeated measurements of health literacy over time would also be helpful, especially for assessing the responsiveness of health literacy to health. For the time being, researchers should be cau- tious in terms of justifying interventions to improve health literacy based on potential cost savings.

REFERENCES

Andrus MR, Roth MT. 2002. Health literacy: A review. Pharmacotherapy. 22(3): 282–302. Baker DW, Parker RM, Williams MV, Clark WS. 1998. Health literacy and the risk of

hospital admission. Journal of General Internal Medicine. 13(12): 791–798. Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. 1999. Development of a

brief test to measure functional health literacy. Patient Education and Counseling. 38: 33–42.

Baker DW, Gazmararian JA, Sudano J, Patterson M. 2000. The association between age and health literacy among elderly persons. Journals of Gerontology Series B—Psychological Sciences & Social Sciences. 55B(6): S368–S374.

Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J. 2002. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. American Journal of Public Health. 92(8): 1278–1283.

Center for Evaluative Clinical Sciences. 1998. The Dartmouth Atlas of Health Care. Chicago, IL: American Hospital Publishing.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

APPENDIX B 265

Cohen JW, Monheit AC, Beauregard KM, Cohen SB, Lefkowitz DC, Potter DE, Sommers JP, Taylor AK, Arnett RH 3rd. 1996–1997. The Medical Expenditure Panel Survey: A national health information resource. Inquiry. 33(4): 373–389.

Coyte PC, Young W, Croxford R. 2000. Costs and outcomes associated with alternative discharge strategies following joint replacement surgery: Analysis of an observational study using a propensity score. Journal of Health Economics. 19(6): 907–929.

Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. 1994. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 93(3): 460–468.

Diehr P, Yanez D, Ash A, Hornbrook M, Lin DY. 1999. Methods for analyzing health care utilization and costs. Annual Review of Public Health. 20: 125–144.

Duan N. 1983. Smearing estimate: A nonparametric retransformation method. Journal of the American Statistical Association. 78: 605–610.

Duan N, Manning WG Jr, Morris CN, Newhouse JP. 1983. A comparison of alternative models for the demand for medical care. Journal of Business and Economic Statistics. 1: 115–126.

Gazmararian JA, Baker DW, Williams MV, Parker RM, Scott TL, Green DC, Fehrenbach SN, Ren J, Koplan JP. 1999. Health literacy among Medicare enrollees in a managed care organization. Journal of the American Medical Association. 281(6): 545–551.

Hellinger FJ, Wong HS. 2000. Selection bias in HMOs: A review of the evidence. Medical Care Research and Review. 57(4): 405–439.

Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL, Garcia P. 2002. The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. American Journal of Obstetrics & Gynecology. 186(5): 938–943.

Manning WG. 1998. Much ado about two: Reconsidering retransformation and the two-part model in health economics. Journal of Health Economics. 48: 375–391.

Mullahy J. 1998. Much ado about two: Reconsidering retransformation and the two-part model in health econometrics. Journal of Health Economics. 17(3): 247–281.

Parker RM, Baker DW, Williams MV, Nurss JR. 1995. The Test of Functional Health Lit- eracy in Adults: A new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine. 10(10): 537–541.

Rubin DB. 1997. Estimating causal effects from large data sets using propensity scores. An- nals of Internal Medicine. 127(8 Pt 2): 757–763.

Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GAD, Bindman AB. 2002. Association of health literacy with diabetes outcomes. Journal of the American Medical Association. 288(4): 475–482.

Scott TL, Gazmararian JA, Williams MV, Baker DW. 2002. Health literacy and preventive health care use among Medicare enrollees in a managed care organization. Medical Care. 40(5): 395–404.

Selden TM, Levit KR, Cohen JW, Zuvekas SH, Moeller JF, McKusick D, Arnett RH 3rd. 2001. Reconciling medical expenditure estimates from the MEPS and the NHA, 1996. Health Care Financing Review. 23(1): 161–178.

Stedman L, Kaestle C. 1991. Literacy and Reading Performance in the United States from 1880 to Present. New Haven, CT: Yale University Press. Pp. 75–128.

Ware J Jr, Kosinski M, Keller SD. 1996. A 12-Item Short-Form Health Survey: Construction of scales and preliminary tests of reliability and validity. Medical Care. 34(3): 220–233.

Weiss BD. 1999. How common is low literacy? In: 20 Common Problems in Primary Care. Weiss BD, Editor. New York: McGraw-Hill. Pp. 468–481.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

266 HEALTH LITERACY

Weiss BD, Blanchard JS, McGee DL, Hart G, Warren B, Burgoon M, Smith KJ. 1994. Illit- eracy among Medicaid recipients and its relationship to health care costs. Journal of Health Care for the Poor & Underserved. 5(2): 99–111.

Wiener JM, Hanley RJ, Clark R, Van Nostrand JF. 1990. Measuring the activities of daily living: Comparisons across national surveys. Journal of Gerontology. 45(6): S229–S237.

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APPENDIX B 267

Improving Chronic Disease Care for Populations with Limited Health Literacy

Dean Schillinger, M.D. The problem with communication is the assumption that it has occurred.

—George Bernard Shaw

Introduction

Chronic disease management is one of the major challenges facing health-care systems and patients in industrialized nations. Nearly three- quarters of all health-care resources are devoted to the treatment of chronic diseases, and nearly one-half of the U.S. population has one or more chronic condition (Institute for Health and Aging, 1996). The collaboration be- tween the system of care, providers, patients, and the community to provide the best health outcomes adds a layer of complexity to the delivery of health care to individuals with chronic disease. Effective disease management is based on systematic, interactive communication between patients and the providers and health system with whom they interact (Norris et al., 2002a, b; Von Korff et al., 1997), all occurring in the context of a commu- nity whose resources meet patients’ needs (Wagner, 1995).

This paper uses the definition of disease management provided by the Task Force on Community Preventive Services, a nonfederal Task Force convened in 1996 by the Department of Health and Human Services (HHS) to provide leadership in the evaluation of community, population, and health-care system strategies to address a variety of public health and health promotion topics, and appointed by the Director of the Centers for Disease Control and Prevention (Norris et al., 2002a, b). Disease management is an organized, proactive, multicomponent approach to health-care delivery that involves all members of a population with a specific disease, is focused on the spectrum of the disease and its complications (including the prevention of co-morbid conditions), and is integrated across the relevant aspects of the delivery system.

The last few decades have seen tremendous advances in the care of chronic conditions, including an array of new therapeutic options, risk- factor modification for secondary prevention of co-morbid conditions, the availability of home monitoring tools, and the growth of disease manage-

The research reported herein was supported, in part, through grants from the National Center for Research Resources (K-23 RR16539), the Soros Open Society Institute, and The Commonwealth Fund.

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268 HEALTH LITERACY

ment programs (Bodenheimer, 1999; Diabetes Control and Complications Trial Research Group, 1993, 1996; McCulloch et al., 2000; United King- dom Prospective Diabetes Study Group, 1998). Despite these advances, health quality and clinical outcomes of patients with chronic diseases vary across sociodemographic lines (American Diabetes Association, 1998; CDC, 2000; Fiscella et al., 2000; Piette, 1999; Vinicor et al., 2000). Much of the burden of chronic disease falls on the elderly and those of low socioeco- nomic status, populations that have also been shown to have dispropor- tionately high rates of health literacy problems (Gazmararian et al., 1999a; Williams et al., 1995b). It is increasingly apparent that the health-care system has not evolved to serve those with limited health literacy. The prevalence of limited health literacy, compounded by a health-care system in which scientific advances and market forces place greater technical and self-management demands on patients and their families, may help to create unequal outcomes despite what some consider equal access (IOM, 2001, 2003).

There currently is a lack of precision and uniformity regarding the meaning of the term “health literacy” (American Medical Association, 1999; Davis et al., 1991; HHS, 2000; Nutbeam, 2000) and little consensus as to the extent to which literacy equates with health literacy (see Chapter 2 in this report). There is general agreement, however, that (1) literacy and numeracy skills are deeply embedded in the construct of health literacy and (2) the problems associated with having limited health literacy are most intense for those individuals with limited literacy skills. The ensuing discus- sion in this chapter is based on these two assumptions.

The purpose of this article is to (1) briefly review the elements of the most well-accepted model to restructure chronic disease care delivery, the Chronic Care Model of Wagner and others (1995), (2) describe the ways in which limited health literacy may lead to worse chronic disease outcomes, (3) use the Chronic Care Model to consider opportunities to reduce health literacy-related disparities, and (4) reflect on strategies to develop quality- of-care indicators to promote improvement in chronic disease care for pa- tients with limited health literacy.

The Chronic Care Model

Health-care delivery is poorly organized to meet the needs of patients with chronic diseases. Rushed practitioners find it difficult to follow estab- lished practice guidelines, limited coordination hampers multidisciplinary care, inadequate training leaves many patients ill-equipped to manage their illnesses, and lack of active follow-up leads to preventable deterioration in function. Some managed care organizations and integrated delivery systems have attempted to correct deficiencies in management of chronic diseases.

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APPENDIX B 269

To guide the reorganization of chronic disease care, Dr. Ed Wagner and others developed the Chronic Care Model (see Figure B-1), which summa- rizes the basic elements for improving care in health systems at multiple levels (Wagner, 1998, 2003). These include the health system, health-care delivery system design, decision support, clinical information systems, the community, and self-management support. For example, a community that has the infrastructure and resources to facilitate patients’ self-care activities (transportation to appointments, safe recreational spaces for exercise, ad- equate produce for healthy food choices, opportunities for educational or communal engagement); a health system that trains patients to be active participants through self-management educational activities (such as group medical visits or other organized, skill-building activities); a clinic that re- structures its care delivery through multidisciplinary teams, planned visits, or home visits; or a practice that uses disease registries to track patients’ progress, stratify intensity of care, promote outreach, and maintain conti- nuity—all would represent efforts consistent with the Chronic Care Model. Focusing on these components could foster interactions between patients

FIGURE B-1 Model for improvement of chronic illness care. SOURCE: Wagner (1998). Reprinted with permission of the American College of Physicians.

Resources and Policies Organization of Health Care

Self-management Support

Decision Support

Delivery System Design

Clinical Information

Systems

Productive Interactions

Functional and Clinical Outcomes

Health SystemCommunity

Informed, Activated

Patient

Prepared, Proactive

Practice Team

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270 HEALTH LITERACY

who take an active part in their care and providers who are backed up by resources and expertise. The Chronic Care Model integrates the published evidence in chronic disease management, including the importance of ex- ecutive leadership and incentives to promote quality, systems to track and monitor patients’ progress and support timely provider decision-making (Piette, 2000), patient self-management training (Lorig et al., 1999; Von Korff et al., 1997), and community-oriented care. Patients and providers prepared in these ways are likely more able to engage in productive interac- tions that promote system efficiency and patient well-being (Norris et al., 2002a).

A growing body of research demonstrates that self-management prac- tices and clinical outcomes in chronic disease care vary by patients’ level of health literacy (Kalichman and Rompa, 2000; Schillinger et al., 2002; Wil- liams et al., 1998b). The Chronic Care Model and similar comprehensive, population-based disease management approaches may offer insights into the ways in which limited health literacy affects chronic disease care and identify potential points of intervention. Preliminary evidence from a small randomized trial suggests that disease management strategies can reduce health literacy-related disparities in diabetes care (Rothman et al., 2003) and that tailoring communication to those with limited health literacy might affect outcomes in chronic anticoagulation and diabetes care (Schillinger et al., 2002, 2003b). However, we were unable to locate published results of any comprehensive disease management systems specifically designed to improve chronic disease care for individuals with limited health literacy. Developing such a system would likely benefit not only those with limited health literacy, but all chronic disease patients, as many of the barriers faced by those with limited health literacy are also experienced, albeit it a somewhat lesser extent, by those with adequate health literacy.

How Limited Health Literacy Affects Chronic Disease Outcomes

Limited health literacy has been shown to be associated with worse health status (Weiss et al., 1992), higher utilization of services (Baker et al., 1997, 1998) and worse clinical outcomes (Kalichman and Rompa, 2000; Schillinger et al., 2002). Whether limited health literacy is a marker for other determinants of health, such as socioeconomic status, or is in the causal pathway to poor health is currently a matter of some debate. For chronic disease care, which relies on self-management, self-advocacy, ongo- ing monitoring, and interactive communication, it is reasonable to hypoth- esize that health literacy may be one determinant of health outcomes.

Limited health literacy may affect many aspects of chronic disease care. It may influence the interaction between provider and patient, impact the ability of the health system to communicate successfully with the patient,

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APPENDIX B 271

and affect the availability of community resources for chronic disease pa- tients and their families (Figure B-2). By reviewing this framework, we can begin to generate a set of priorities for targeted study and intervention that reflects a blending of what we have learned from the Chronic Care Model and what is known about empowering low-literacy adults from the field of adult education (Roter et al., 1998, 2001).

Office-Based Clinician–Patient Communication

Much of chronic disease care takes place in the context of a medical office visit. Communication about chronic diseases during outpatient visits may be hampered by several factors. These include the relative infrequency and brevity of visits, language barriers and limited literacy, differences between providers’ and patients’ agendas and communication styles, lack

FIGURE B-2 Improving chronic disease care: a framework based on health litera- cy and related research.

• Interactive, Participatory Communication • Open Discussion of Explanatory Models • Collaborative Goal Setting • Patient Recall and Comprehension of Advice and Instructions • Understanding of Disease Processes and Treatment Options • Trust

Improved Provider-Patient Communication

Enhanced Community

Factors

Social Policy

• Access • health coverage • provider availability • Economic Resources • Adult Education • Environmental: • nutrition • air quality • physical activity • safety • occupational risks • Trust in Health System • Power and Advocacy • Public Health Messages/ Health Promotion Activities

Expanded Home-Based

Monitoring and Clinical Support

• Patient and Family Empowerment • Good Self-Management Practices • Learning and Skill-Based Registries • Decision Support and Problem-Solving Skills • Ability to Navigate System and Self-Advocate • Maintaining Continuity in Communication • Self-Efficacy

Improved Clinical Outcomes and Better Quality of Life

Health Policy/Incentives

Health Policy/Incentives

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272 HEALTH LITERACY

of trust between the patient and provider, overriding or competing clinical problems, lack of timeliness of the visit in relation to disease-specific prob- lems, and the complexity and variability of patients’ reporting of symptoms and progress of their disease.

Patients with chronic diseases and limited health literacy have been shown to have less knowledge of their condition and of its management (Williams et al., 1998a, b) often despite having received standard self- management education. Patients with limited health literacy have greater difficulties accurately reporting their medication regimens and describing the reasons for which their medications were prescribed (Schillinger et al., 2003b; Williams et al., 1995a; Win and Schillinger, 2003) and more fre- quently have explanatory models that may interfere with adherence (Kalichman et al., 1999). While patients with limited health literacy clearly have problems with literacy and numeracy skills in the health-care setting, patients also experience difficulties with oral communication. A recent study among patients with diabetes demonstrated that those patients with limited health literacy (as measured by the Short Test of Functional Health Literacy in Adults [S-TOFHLA] [Nurss et al., 1995]) appear to have particular problems with both the decision-making and the explanatory, technical components of dialogue (Schillinger et al., 2004). Patients with limited health literacy may also be less likely to challenge, ask questions of the provider (Baker et al., 1996; Street, 1991), or disclose poor understanding (Baker et al., 1996), and may cope by being passive or appearing uninter- ested (Cooper and Roter, 2003; Roter, 2000; Roter and Hall, 1992; Roter et al., 1997). Clinicians tend to underestimate the information needs of patients (Cegala, 1997) and underuse interactive teaching strategies that may be especially useful for patients with limited health literacy (Schillinger et al., 2003b). Clinicians’ frequent use of jargon in clinical encounters may be particularly problematic for patients with limited health literacy. This jargon can range from technical jargon (words that have meaning only in the clinical context, e.g., “glucometer”), quantitative jargon (words for which clinical judgment is required to accurately interpret, e.g., “excessive wheezing”), to lay jargon (words for which two meanings exist, one with clinical meaning and the other with lay meaning, e.g., “your weight is stable”). Clinicians are often unaware of the mismatch between their pro- cess of giving information and patients’ process of recalling, understanding, and acting on the information (Davis et al., 2002b; Doak et al., 1998; Williams et al., 2002).

Home-Based Monitoring and Clinical Support

Chronic care involves an ongoing process of patient assessments, ad- justments to treatment plans, and reassessments to measure change in pa-

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APPENDIX B 273

tient health status. Without timely and reliable information about patients’ health status, symptoms, and self-care, the necessary health education, treat- ments, or behavioral adjustments may come late or not at all. This can compromise patients’ health and increase the likelihood of poor outcomes.

To best manage chronic disease, patients must remember any self-care instructions they have received from their provider, be able to correctly interpret symptoms or results of self-monitoring, and appropriately solve problems regarding adjustments to the treatment regimen, as well as when and how to contact the provider should the need arise. A number of studies demonstrate that patients remember and understand as little as half of what they are told by their physicians (Bertakis, 1977; Cole and Bird, 2000; Crane, 1997; Rost and Roter, 1987; Roter, 2000) and the more informa- tion provided, the less the patient is able to recall (Chow, 2003). Patients with limited health literacy are likely to understand and remember at even lower rates (Schillinger et al., 2004). In addition, they may be less equipped to overcome gaps when they are at home due to knowledge deficits (Will- iams et al., 1998a, b) and difficulties reading or interpreting instructions (Crane, 1997; Williams et al., 1998b). Cross-sectional studies involving patients with diabetes suggest that traditional self-management education may not eliminate health literacy-related disparities in chronic disease out- comes (Schillinger et al., 2002; Williams et al., 1998b).

Only a minority of clinical practices provide any form of care manage- ment that involves outreach and support in the patient’s home (Casalino et al., 2003). In addition, home-based disease-specific education, monitoring, and clinical support increasingly rely on patients and providers interacting via web-based or “e-health” interfaces (Robert Wood Johnson Foundation and the National Cancer Institute, 2002). While these interfaces have been suggested as a potential method of increasing interaction between patients and providers (Robert Wood Johnson Foundation and the National Cancer Institute, 2002), they may present overwhelming barriers to patients with limited health literacy. Individuals with limited health literacy may have trouble accessing the web (Fox and Fallows, 2003), difficulties reading from web sites (Berland et al., 2001), and problems with navigation once they get online (Robert Wood Johnson Foundation, 2002; Zarcadoolas et al., 2002). Accreditation of health-related web sites (such as the Health on the Net Foundation Code of Conduct) does little to improve readability of diabetes web sites (Kusec et al., 2003).

Simply transforming text versions of disease-specific education to more visually oriented media (i.e., CD-ROM), while associated with improve- ments in satisfaction, does not appear to increase knowledge among pa- tients with limited health literacy (Kim et al., 2001). Focus groups of pa- tients with limited health literacy have identified health system navigation (finding resources within the health system, such as knowing whom, for

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274 HEALTH LITERACY

what, and when to call for assistance with a problem) as a particularly daunting aspect of chronic disease management (Baker et al., 1996).

Community and Environmental Factors

Data from the National Adult Literacy Survey (Kirsch, 1993) demon- strate regional variation in literacy rates that parallels neighborhood pat- terns of socioeconomic status, immigrant status, age, and race and ethnicity. Studies in health-care settings (Gazmararian et al., 1999b; Williams et al., 1995b) indicate that patients with limited health literacy comprise a large sector of patients in public hospitals and community clinics that predomi- nantly serve socioeconomically disadvantaged populations, and in private health systems that serve the elderly or those with low incomes, such as Medicare and Medicaid managed care organizations. Little work has been done exploring the relationship between limited health literacy and neigh- borhood characteristics, particularly those of direct relevance to chronic disease management. Recent work from social epidemiology (Berkman and Kawachi, 2000) and literacy theory (Wallerstein and Bernstein, 1988) can inform how community factors can either assist or hamper disease manage- ment efforts for patients with limited health literacy. Communities that have high rates of limited health literacy may be less able to assert political power and advocate for the health and health-care needs of their commu- nity (Nutbeam, 2000). Residents of medically underserved areas experience greater difficulties accessing a regular source of health care, a problem that has been shown to be associated with preventable hospitalizations for chronic conditions (Bindman et al., 1995). Other environmental attributes of communities, such as the availability of goods and services that promote health, the quality of the air and recreational physical space, and occupa- tional risks associated with neighborhood employment may each interact with limited health literacy to lead to worse health. In addition, recent studies examining disparities in quality of care demonstrate racial and eth- nic differences in level of trust in the health-care system that may influence how these communities interact with the health-care system (IOM, 2003). Finally, the focus of health promotion messages and activities that take place at the community level may not be aligned with the needs of patients with limited health literacy (Nutbeam, 2000).

Shaping the Chronic Care Model for Patients with Limited Health Literacy

One of the underlying assumptions of the Chronic Care Model is that the reorganization of health care will lead to more productive interactions between informed, involved patients, and prepared, proactive practice

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APPENDIX B 275

teams, which will, in turn, lead to better outcomes (Figure B-1). In order for this assumption to hold for populations with limited health literacy, we need to think more critically about the ways in which we communicate across the levels described above to ensure that interactions indeed are productive. If we apply the Chronic Care Model without also attending to the unique challenges to chronic disease management posed by limited health literacy, we may improve care for many but run the risk of perpetu- ating disparities in outcomes for those with limited health literacy.

In order to engage in more productive interactions with patients who have limited health literacy, solutions must primarily affect the nature, quality, and extent of communication. Previous research indicates patients want practical, concise information focused on the identification of the problem, what specifically the patient needs to do, why it is in their best interest, and what outcomes they can expect (Davis et al., 2001, 2002a, b). Communication strategies commonly employed by health professionals are often only marginally effective for those with limited health literacy. At present, clinicians do not have the means to uncover how patients learn best, nor the tools to more effectively engage patients who do not appear to be maximally benefiting from clinical interactions. In order to support patients’ acquisition of self-management skills and increase confidence to carry out self-management tasks, efforts should be made to develop tools to assess how patients learn in the clinical setting, and to expand the repertoire of options to match patients’ learning style or preferences. Some principles derived from the field of adult education may be relevant to chronic disease communication (Brookfield, 1986; Roter et al., 2001; Wallerstein, 1992). Learners (patients) should be involved in developing health education mes- sages, materials, and programs (Davis et al., 1998a, b; Rudd and Comings, 1994). Learning should be participatory; patients should be actively in- volved in setting the agenda or curriculum and, at times, even leading it so as to ensure relevance (relating and reflecting on experience), encourage ongoing involvement, promote the development of behavior change through critical thinking (thoughtful action), and support other learners to succeed. This involvement will help ensure the education is relevant, understand- able, culturally sensitive, and empowering. Interactions should involve ex- ploration and problem-based learning (Cooper et al., 2003). Patient educa- tion activities should be designed so as to engage patients in ways relevant to their lives and their conditions and that enhance problem-solving skills (Center for Literacy Studies, 2003). Such activities educational focus may lead to patient-generated goal-setting, an important intermediate objective in successful chronic disease care (Anderson, 1995; Anderson et al., 1995). Group medical visits, an innovation in which groups of patients who share a common condition regularly meet with a health provider, have the poten- tial to operate via these principles. Results of a small trial with diabetes

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276 HEALTH LITERACY

patients suggests that, when designed with the collaboration of an expert in adult education, such visits can dramatically improve outcomes (Trento et al., 2001, 2002).

As chronic disease education, monitoring, and clinical support move beyond the office walls to include e-health and other forms of telemedicine, it is critical that patients with limited health literacy are not left behind (Robert Wood Johnson Foundation and the National Cancer Institute, 2002). Individuals with limited health literacy must be involved in all stages of intervention design and testing. This participatory development method allows for input during the generative phase of an intervention, provides opportunities for feedback during multiple points of pilot testing, and can engender trust and participation during the evaluation phase (Houts et al., 1998; Jacobson et al., 1999). As an example, our recent work at San Francisco General Hospital involves the development of an automated tele- phone diabetes management system for patients with limited health lit- eracy. The idea for a telephone-based intervention was generated, in part, from patients. The program was developed with the active involvement of adult learners and patients with limited health literacy, which significantly altered numerous aspects of the program. Patients wanted to hear that we are actively listening and care about their well-being. They preferred narra- tive instead of instruction-based health education. Patients recommended we reduce the speed with which messages are delivered and limit the amount of technical language in order to make the messages more understandable. We are currently evaluating the effect of this system on diabetes-related outcomes.

If all patients with chronic diseases are to benefit from emerging tech- nologies, particularly interventions that involve the Internet, research must explore how to best design such programs for patients with limited health literacy (Robert Wood Johnson Foundation and the National Cancer Insti- tute, 2002). Such research will also require professional collaboration be- tween disciplines such as computer science, health communication, educa- tion, economics, marketing, sociology, and library and information science.

If we are to redesign the health-care delivery system and better support patients in their self-management, it is important to recognize the needs that patients with limited health literacy have expressed with regards to system navigation. We must better understand the elements of successful system navigation and apply this understanding to support patients’ navi- gation and self-advocacy skills, and better equip patients to get what they need from a complex system. We need to partner with patients with limited health literacy to identify those aspects of the system that represent bottle- necks and to design solutions that lower such barriers.

A crucial component to reducing the burden of limited health literacy lies with the providers of health care. In order to boost provider prepared-

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APPENDIX B 277

ness, we need to prime the workforce to more effectively care for patients who have chronic diseases and limited health literacy. Training of all health professionals that focuses on communication strategies to enhance clinician self-awareness (Frankel and Stein, 2001), mutual learning, partnership- building, collaborative goal-setting, and behavior change for chronic dis- ease patients is essential (Wagner, 2003; Youmans and Schillinger, 2003). Such training should be expanded to include all members of the multidis- ciplinary health team, including lay health educators, both as learners and teachers. These efforts must be informed by new health communication research that involves patients with limited health literacy, a segment often under-represented in clinical research.

Community efforts should focus on developing relationships that foster trust, providing resources to measure and meet community needs, and ultimately preparing members of a community to effectively advocate for the needs of their community (Figueroa et al., 2002). Public health mes- sages should take into account the health literacy skills of the population to whom the message is being targeted, involve the population from the begin- ning, and make use of appropriate channels to convey these messages (Bird et al., 1998).

Measuring Progress

In order to promote progress in chronic care delivery for patients with limited health literacy, quality-of-care measures must be designed to cap- ture health literacy-related performance. If incentives are aligned to im- prove quality, such measures of health-care quality can, in turn, lead to the creation of standards of care and improve practice. There are several pos- sible approaches to measuring the extent to which health systems are meeting the needs of patients with limited health literacy. An indirect approach, advocated by those involved in initiatives to reduce racial and ethnic disparities in quality of care (IOM, 2003; Sehgal, 2003) is to use existing measures of quality, such as Medicaid Health Plan Employer Data and Information Set indicators (that currently do not include any health literacy-specific indicators), and stratify a system’s performance by race or ethnicity, or, in this case, health literacy level. Such an approach would enable a comparison of performance in process or outcome measures among those with inadequate health literacy in comparison to those with adequate health literacy. A health system can be considered improving if overall performance is improving and if the extent of health literacy- related variation in performance is narrowing over time. The main chal- lenge to this strategy is the complexity involved in measuring health lit- eracy. Current instruments take between 3 and 7 minutes and require in- person administration (Baker et al., 1999). Education level is not a useful

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278 HEALTH LITERACY

proxy for health literacy, as there is only a modest correlation between education and health literacy. There also are interactions between educa- tion and other demographic characteristics (e.g., ethnicity, age, primary language) on health literacy (Beers et al., 2003; Guerra and Shea, 2003). A recent study suggests that a single questionnaire item may have reasonable sensitivity and specificity in detecting inadequate health literacy and ap- pears to perform well if the prevalence of inadequate health literacy in the population is high enough (Chew and Bradley, 2003). In order for a strat- egy of reducing health literacy-related disparities by measuring health lit- eracy-related quality is to succeed, research to develop a rapid and reliable measure of health literacy is needed.

A second approach is to develop novel measures of quality that may be less disease-specific, yet have particular relevance to patients with limited health literacy across chronic conditions. To our knowledge, relatively little work has been done in this regard. For example, the National Center for Quality Assurance (NCQA) for managed care organizations has cre- ated standards regarding the readability of the patient appeal of denial of services form (NCQA, 2003). While arguably of importance, the approach of assessing quality by measuring document readability is obviously nar- row in scope, and does not capture a more comprehensive view of the patient experience. Other possibilities include measuring patients’ reports of their experiences of communication (Schillinger et al., 2004), rates of discordance between patients’ and providers’ reports of medication regi- mens (Schillinger et al., 2003a), the extent to which home monitoring and support for chronic disease is available (Norris et al., 2002b), the range of learning options and media available to patients, the ease with which one can navigate a health system, or capturing the degree to which a health system has a family and community orientation (Starfield, 1998). In order for significant progress to be made, it is essential that research is done to develop appropriate quality indicators for health literacy-related perfor- mance.

CONCLUSIONS

Despite wide variation in literacy levels, our society places high literacy demands on its members. It is apparent that attempts to reduce health literacy-related disparities must revolve around either directly addressing the problem of basic literacy and/or creating a health-care system in which the gap between the literacy demands of the system and the literacy skills of the patients it serves is significantly narrowed. Modern chronic disease care requires that patients play an active role in their care, and that clinicians and the health systems in which they work take on the challenge of partner- ing with patients to promote successful outcomes. Meeting these goals is

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APPENDIX B 279

often most challenging for those patients who have the greatest need. When considered as a barrier to successful health communication as well as a marker for problems with navigation and self-advocacy, it becomes clear that the concerns related to limited health literacy are inescapably linked to the challenges of chronic disease management. In order to ensure that the Chronic Care Model and increasingly sophisticated chronic disease man- agement programs can benefit patients with limited health literacy, atten- tion must be paid to tailor design and implementation with the involvement of patients with limited health literacy, and to expand the reach of such programs. By promoting meaningful, collaborative communication between patients and the providers and systems that serve them, such a reorganiza- tion is likely to benefit all patients with chronic diseases.

REFERENCES

American Diabetes Association. 1998. Economic consequences of diabetes mellitus in the U.S. in 1997. Diabetes Care. 21(2): 296–309.

American Medical Association. 1999. Health literacy: Report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Journal of the American Medical Association. 281(6): 552–557.

Anderson RM. 1995. Patient empowerment and the traditional medical model. A case of irreconcilable differences. Diabetes Care. 18(3): 412–415.

Anderson RM, Funnell MM, Butler PM, Arnold MS, Fitzgerald JT, Feste CC. 1995. Patient empowerment. Results of a randomized controlled trial. Diabetes Care. 18(7): 943–949.

Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, Imara M. 1996. The health care experience of patients with low literacy. Archives of Family Medicine. 5(6): 329–334.

Baker DW, Parker RM, Williams MV, Clark WS, Nurss J. 1997. The relationship of patient reading ability to self-reported health and use of health services. American Journal of Public Health. 87(6): 1027–1030.

Baker DW, Parker RM, Williams MV, Clark WS. 1998. Health literacy and the risk of hospital admission. Journal of General Internal Medicine. 13(12): 791–798.

Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. 1999. Development of a brief test to measure functional health literacy. Patient Education and Counseling. 38: 33–42.

Beers BB, McDonald VJ, Quistberg DA, Ravenell KL, Asch DA, Shea JA. 2003. Disparities in health literacy between African American and non-African American primary care pa- tients. Journal of General Internal Medicine. 18(S1): 169.

Berkman LF, Kawachi, IO. 2000. Social Epidemiology. Oxford: Oxford University Press. Berland GK, Elliott MN, Morales LS, Algazy JI, Kravitz RL, Broder MS, Kanouse DE, Munoz

JA, Puyol JA, Lara M, Watkins KE, Yang H, McGlynn EA. 2001. Health information on the Internet: Accessibility, quality, and readability in English and Spanish. Journal of the American Medical Association. 285(20): 2612–2621.

Bertakis KD. 1977. The communication of information from physician to patient: A method for increasing patient retention and satisfaction. Journal of Family Practice 5(2): 217– 222.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

280 HEALTH LITERACY

Bindman AB, Grumbach K, Osmond D, Komaromy M, Vranizan K, Lurie N, Billings J, Stewart A. 1995. Preventable hospitalizations and access to health care. Journal of the American Medical Association. 274(4): 305–311.

Bird JA, McPhee SJ, Ha NT, Le B, Davis T, Jenkins CN. 1998. Opening pathways to cancer screening for Vietnamese-American women: Lay health workers hold a key. Preventive Medicine. 27(6): 821–829.

Bodenheimer T. 1999. Disease management—Promises and pitfalls. New England Journal of Medicine. 340(15): 1202–1205.

Brookfield, S. 1986. Understanding and Facilitating Adult Learning. 1st edition. San Fran- cisco, CA: Jossey-Bass.

Casalino L, Gillies RR, Shortell SM, Schmittdiel JA, Bodenheimer T, Robinson JC, Rundall T, Oswald N, Schauffler H, Wang MC. 2003. External incentives, information technology, and organized processes to improve health care quality for patients with chronic dis- eases. Journal of the American Medical Association. 289(4): 434–441.

CDC (Centers for Disease Control and Prevention). 2000. National Diabetes Fact Sheet. Atlanta, GA: Centers for Disease Control and Prevention.

Cegala DJ. 1997. A study of doctors’ and patients’ communication during a primary care consultation: Implications for communication training. Journal of Health Communica- tion. 2(3): 169–194.

Center for Literacy Studies. 2003. Equipped for the Future: EFF Center for Training and Technical Assistance. University of Tennessee [Online]. Available: http:www.nifl.gov/ lincs/collections/eff/eff.html [accessed: September, 2003].

Chew LD, Bradley KA. 2003. Brief questions to detect inadequate health literacy among VA patients. Abstract. Journal of General Internal Medicine. 18(Supplement 1): 170.

Chow KM. 2003. Information recall by patients. Journal of the Royal Society of Medicine. 96(7): 370.

Cole, SA, Bird J. 2000. The Medical Interview: The Three-Function Approach. 2nd edition. St. Louis: Mosby.

Cooper LA, Roter DL. 2003. Patient-provider communication: The effect of race and ethnicity on process and outcomes in health care. In: Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, Editors. Washing- ton, DC: The National Academies Press. Pp. 336–354.

Cooper HC, Booth K, Gill G. 2003. Patients’ perspectives on diabetes health care education. Health Education Research. 18(2): 191–206.

Crane JA. 1997. Patient comprehension of doctor-patient communication on discharge from the emergency department. Journal of Emergency Medicine. 15(1): 1–7.

Davis TC, Crouch MA, Long SW, Jackson RH, Bates P, George RB, Bairnsfather LE. 1991. Rapid assessment of literacy levels of adult primary care patients. Family Medicine. 23(6): 433–435.

Davis TC, Berkel HJ, Arnold CL, Nandy I, Jackson RH, Murphy PW. 1998a. Intervention to increase mammography utilization in a public hospital. Journal of General Internal Medicine 13(4): 230–233.

Davis TC, Fredrickson DD, Arnold C, Murphy PW, Herbst M, Bocchini JA. 1998b. A polio immunization pamphlet with increased appeal and simplified language does not improve comprehension to an acceptable level. Patient Education and Counseling. 33(1): 25–37.

Davis TC, Fredrickson DD, Arnold CL, Cross JT, Humiston SG, Green KW, Bocchini JA Jr. 2001. Childhood vaccine risk/benefit communication in private practice office settings: A national survey. Pediatrics. 107(2): E17.

Davis TC, Fredrickson DD, Bocchini C, Arnold CL, Green KW, Humiston SG, Wilder E, Bocchini JA Jr. 2002a. Improving vaccine risk/benefit communication with an immuni- zation education package: A pilot study. Ambulatory Pediatrics. 2(3): 193–200.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

APPENDIX B 281

Davis TC, Williams MV, Marin E, Parker RM, Glass J. 2002b. Health literacy and cancer communication. Ca: A Cancer Journal for Clinicians. 52(3): 134–149.

Diabetes Control and Complications Trial Research Group. 1993. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. New England Journal of Medicine. 329(14): 977– 986.

Diabetes Control and Complications Trial Research Group. 1996. Lifetime benefits and costs of intensive therapy as practiced in the diabetes control and complications trial. Journal of the American Medical Association. 276(17): 1409–1415.

Doak CC, Doak LG, Friedell GH, Meade CD. 1998. Improving comprehension for cancer patients with low literacy skills: Strategies for clinicians. [Review] [50 refs]. Ca: A Can- cer Journal for Clinicians. 48(3): 151–162.

Figueroa ME, Kincaid DL, Rani M, Lewis G. 2002. Communication for Social Change Work- ing Paper Series. Communication for Social Change: An Integrated Model for Measur- ing the Process and Its Outcomes. New York: The Rockefeller Foundation and Johns Hopkins University Center for Communication Programs.

Fiscella K, Franks P, Gold MR, Clancy CM. 2000. Inequality in quality: Addressing socioeco- nomic, racial, and ethnic disparities in health care. Journal of the American Medical Association. 283(19): 2579–2584.

Fox S, Fallows D. 2003 (July 16). Internet Health Resources: health searches and email have become more commonplace, but there is room for improvement in searches and overall Internet access. Washington, DC: Pew Internet & American Life Project.

Frankel RM, Stein T. 2001. Getting the most out of the clinical encounter: The four habits model. Journal of Medical Practice Management. 16(4): 184–191.

Gazmararian JA, Baker DW, Williams MV, Parker RM, Scott TL, Green DC, Fehrenbach SN, Ren J, Koplan JP. 1999a. Health literacy among Medicare enrollees in a managed care organization. Journal of the American Medical Association. 281(6): 545–551.

Gazmararian JA, Baker DW, Williams MV, Parker RM, Scott T, Greemn DCFSN, Ren J, Koplan JP. 1999b. Health literacy among Medicare enrollees in a managed care organi- zation. Journal of the American Medical Association. 281(6): 545–551.

Guerra CE, Shea JA. 2003. Functional health literacy, comorbidity and health status. Journal of General Internal Medicine. 18(Supplement 1): 174.

HHS (U.S. Department of Health and Human Services). 2000. Healthy People 2010: Under- standing and Improving Health. Washington, DC: U.S. Department of Health and Hu- man Services.

Houts PS, Bachrach R, Witmer JT, Tringali CA, Bucher JA, Localio RA. 1998. Using picto- graphs to enhance recall of spoken medical instructions. Patient Education and Counsel- ing. 35(2): 83–88.

Institute for Health and Aging. 1996. Chronic Care in America: A 21st Century Challenge. Princeton, NJ: The Robert Wood Johnson Foundation.

IOM (Institute of Medicine). 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press.

IOM. 2003. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press.

Jacobson TA, Thomas DM, Morton FJ, Offutt G, Shevlin J, Ray S. 1999. Use of a low- literacy patient education tool to enhance pneumococcal vaccination rates: A random- ized controlled trial. Journal of the American Medical Association. 282(7): 646–650.

Kalichman SC, Rompa D. 2000. Functional health literacy is associated with health status and health-related knowledge in people living with HIV-AIDS. Journal of Acquired Immune Deficiency Syndromes & Human Retrovirology. 25(4): 337–344.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

282 HEALTH LITERACY

Kalichman SCP, Ramachandran BB, Catz SP. 1999. Adherence to combination antiretroviral therapies in HIV patients of low health literacy. Journal of General Internal Medicine. 14(5): 267–273.

Kim SP, Knight SJ, Tomori C, Colella KM, Schoor RA, Shih L, Kuzel TM, Nadler RB, Bennett CL. 2001. Health literacy and shared decision making for prostate cancer pa- tients with low socioeconomic status. Cancer Investigation. 19(7): 684–691.

Kirsch IS (Educational Testing Service (ETS)). 1993. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Washington, DC: U.S. Government Printing Office.

Kusec S, Brborovic O, Schillinger D. 2003. Diabetes websites accredited by the Health on the Net Foundation Code of Conduct: Readable or not? Studies in health technology and informatics. Vol. 95. In: The New Navigators: From Professionals to Patients. Baud R, Fieschi M, Le Beux P, Ruch P, Editors. Amsterdam, NE: IOS Press.

Lorig KR, Sobel DS, Stewart AL, Brown BW Jr, Bandura A, Ritter P, Gonzalez VM, Laurent DD, Holman HR. 1999. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial. Medical Care. 37(1): 5–14.

McCulloch DK, Price MJD, Hindmarsh M, Wagner EH. 2000. Improvement in diabetes care using an integrated population-based approach in a primary care setting. Disease Man- agement. 3(2): 75–82.

NCQA (National Committee for Quality Assurance). 2003. Measuring the Quality of Amer- ica’s Health Care. [Online]. Available: http://www.ncqa.org [accessed: July, 2003].

Norris SL, Nichols PJ, Caspersen CJ, Glasgow RE, Engelgau MM, Jack L, Isham G, Snyder SR, Carande-Kulis VG, Garfield S, Briss P, McCulloch D. 2002a. The effectiveness of disease and case management for people with diabetes. A systematic review. American Journal of Preventive Medicine. 22(4 Supplement): 15–38.

Norris SL, Nichols PJ, Caspersen CJ, Glasgow RE, Engelgau MM, Jack L, Snyder SR, Carande-Kulis VG, Isham G, Garfield S, Briss P, McCulloch D. 2002b. Increasing diabe- tes self-management education in community settings. A systematic review. American Journal of Preventive Medicine. 22(4 Supplement): 39–66.

Nurss JR, Parker RM, Williams MV, Baker DW. 1995. TOFHLA: Test of Functional Health Literacy in Adults. Snow Camp, NC: Peppercorn Books & Press.

Nutbeam D. 2000. Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International. 15(3): 259–267.

Piette JD. 1999. Satisfaction with care among patients with diabetes in two public health care systems. Medical Care. 37(6): 538–546.

Piette JD. 2000. Interactive voice response systems in the diagnosis and management of chronic disease. American Journal of Managed Care. 6(7): 817–827.

Robert Wood Johnson Foundation. 2002. Annual Report 2001. Princeton, NJ: The Robert Wood Johnson Foundation.

Robert Wood Johnson Foundation and the National Cancer Institute. 2002. A Research Dialogue: Online Behavior Change and Disease Management Research. [Online]. Avail- able: http://www.rwjf.org/publications/publicationsPdfs/onlineBehaviorChange.pdf [ac- cessed: November 10, 2003].

Rost K, Roter D. 1987. Predictors of recall of medication regimens and recommendations for lifestyle change in elderly patients. Gerontologist. 27(4): 510–515.

Roter DL. 2000. The outpatient medical encounter and elderly patients. Clinics in Geriatric Medicine. 16(1): 95–107.

Roter DL, Hall JA. 1992. Doctors Talking with Patients/Patients Talking with Doctors: Im- proving Communication in Medical Visits. Westport, CT: Auburn House.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

APPENDIX B 283

Roter DL, Stewart M, Putnam SM, Lipkin M Jr, Stiles W, Inui TS. 1997. Communication patterns of primary care physicians. Journal of the American Medical Association. 277(4): 350–356.

Roter DL, Rudd RE, Comings J. 1998. Patient literacy. A barrier to quality of care. Journal of General Internal Medicine. 13(12): 850–851.

Roter DL, Stashefsky-Margalit R, Rudd R. 2001. Current perspectives on patient education in the US. Patient Education and Counseling. 44(1): 79–86.

Rothman R, Pignone M, Malone R, Bryant B, Crigler B. 2003. A primary care-based, phar- macist led, disease management program improves outcomes for patients with diabetes: A randomized controlled trial Journal of General Internal Medicine. 18(Supplement 1): 155.

Rudd RE, Comings JP. 1994. Learner developed materials: An empowering product. Health Education Quarterly. 21(3): 313–327.

Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GaD, Bindman AB. 2002. Association of health literacy with diabetes outcomes. Journal of the American Medical Association. 288(4): 475–482.

Schillinger D, Machtinger E, Win K, Wang F, Chan L-L, Rodriguez ME. 2003a. Are pictures worth a thousand words? Communication regarding medications in a public hospital anticoagulation clinic Journal of General Internal Medicine 18(Supplement 1): 187.

Schillinger D, Piette J, Grumbach K, Wang F, Wilson C, Daher C, Leong-Grotz K, Castro C, Bindman AB. 2003b. Closing the loop: Physician communication with diabetic patients who have low health literacy. Archives of Internal Medicine. 163(1): 83–90.

Schillinger D, Bindman A, Stewart A, Wang F, Piette J. 2004. Functional health literacy and the quality of physician-patient communication among diabetes patients. Patient Educa- tion and Counseling. 52(3): 315–323.

Sehgal AR. 2003. Impact of quality improvement efforts on race and sex disparities in hemo- dialysis. Journal of the American Medical Association. 289(8): 996–1000.

Starfield B. 1998. Primary Care: Balancing Health Needs, Services, and Technology. New York: Oxford University Press.

Street RL Jr. 1991. Information-giving in medical consultations: The influence of patients’ communicative styles and personal characteristics. Social Science and Medicine. 32(5): 541–548.

Trento M, Passera P, Tomalino M, Bajardi M, Pomero F, Allione A, Vaccari P, Molinatti GM, Porta M. 2001. Group visits improve metabolic control in type 2 diabetes: A 2-year follow-up. Diabetes Care. 24(6): 995–1000.

Trento M, Passera P, Bajardi M, Tomalino M, Grassi G, Borgo E, Donnola C, Cavallo F, Bondonio P, Porta M. 2002. Lifestyle intervention by group care prevents deterioration of Type II diabetes: A 4-year randomized controlled clinical trial. Diabetologia. 45(9): 1231–1239.

United Kingdom Prospective Diabetes Study Group. 1998. Intensive blood-glucose control with sulphonylureas or insulin compared with conventional treatment and risk of com- plications in patients with type 2 diabetes (UKPDS 33). Lancet. 352(9131): 837–853.

Vinicor F, Burton B, Foster B, Eastman R. 2000. Healthy people 2010: Diabetes. Diabetes Care. 23(6): 853–855.

Von Korff M, Gruman J, Schaefer J, Curry SJ, Wagner EH. 1997. Collaborative management of chronic illness. Annals of Internal Medicine. 127(12): 1097–1102.

Wagner EH. 1995. Population-based management of diabetes care. Patient Education and Counseling. 26(1–3): 225–230.

Wagner EH. 1998. Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice. 1(1): 2–4.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

284 HEALTH LITERACY

Wagner, EH. 2003. The Chronic Care Model: Improving Chronic Illness Care. [Online]. Available: http://www.improvingchroniccare.org/change/model/components.html [ac- cessed: March, 2003].

Wallerstein N. 1992. Powerlessness, empowerment, and health: Implications for health pro- motion programs. American Journal of Health Promotion. 6(3): 197–205.

Wallerstein N, Bernstein E. 1988. Empowerment education: Freire’s ideas adapted to health education. Health Education Quarterly. 15(4): 379–394.

Weiss BD, Hart G, McGee DL, D’Estelle S. 1992. Health status of illiterate adults: Relation between literacy and health status among persons with low literacy skills. Journal of the American Board of Family Practice. 5(3): 257–264.

Williams MV, Parker RM, Baker DW, Coates W, Nurss J. 1995a. The impact of inadequate functional health literacy on patients’ understanding of diagnosis, prescribed medica- tions, and compliance. Academic Emergency Medicine. 2: 386.

Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K, Coates WC, Nurss JR. 1995b. Inadequate functional health literacy among patients at two public hospitals. Journal of the American Medical Association. 274(21): 1677–1682.

Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. 1998a. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 114(4): 1008–1015.

Williams MV, Baker DW, Parker RM, Nurss JR. 1998b. Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hyper- tension and diabetes. Archives of Internal Medicine. 158(2): 166–172.

Williams MV, Davis T, Parker RM, Weiss BD. 2002. The role of health literacy in patient- physician communication. Family Medicine. 34(5): 383–389.

Win K, Schillinger D. 2003. Understanding of warfarin therapy and stroke among ethnically diverse anticoagulation patients at a public hospital. Journal of General Internal Medi- cine. 18(Supplement 1): 278.

Youmans S, Schillinger D. 2003. Functional health literacy and medication management: The role of the pharmacist. Annals of Pharmacotherapy. 37(11): 1726–1729.

Zarcadoolas C, Blanco M, Boyer JF, Pleasant A. 2002. Unweaving the Web: An exploratory study of low-literate adults’ navigation skills on the World Wide Web. Journal of Health Communication. 7(4): 309–324.

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APPENDIX B 285

Outside the Clinician–Patient Relationship: A Call to Action for Health Literacy

Barry D. Weiss, M.D.

Many governmental, corporate, and nonprofit businesses, organiza- tions, and agencies have, or should have, an interest in the health literacy problem—because limited health literacy is prevalent in the groups for which these entities are responsible. These entities can be broadly catego- rized as insurers, employers, and advocacy groups.

Insurers should have an interest in the health literacy problem because they pay for the medical care provided to individuals with limited literacy skills, and these individuals have higher illness rates and higher health-care costs than the population in general. Employers should care about literacy because they pay for the health insurance of their workers who have limited literacy skills, and they also lose worker productivity as a result of their employee’s limited literacy. Advocacy groups should care about the literacy problem because limited literacy skills often prevent their constituents from achieving full potential in society. Methods by which these and other orga- nizations and systems might help improve America’s health literacy issue are shown in Table B-5, below.

Insurers

Several entities provide medical insurance coverage groups in which low literacy is most prevalent. They include the publicly funded Medicare and Medicaid programs and the military’s Tricare program.

Medicare

The Medicare program is a federally funded program that provides health insurance benefits to most elderly U.S. citizens. Medicare’s costs are heavily influenced by limited health literacy because of the high rate of limited literacy skills among elderly individuals. According to the Centers for Medicare and Medicaid Services, around 35 million persons over 65 years old currently receive Medicare benefits, and the number of beneficia- ries increases annually (Figure B-3).

Federal expenditures for the Medicare program now exceed $240 bil- lion per year for medical benefits, administrative costs, and program integ- rity costs, representing some 20 percent of all health-care spending in the country. These costs will all increase as the number of beneficiaries contin- ues to grow (Figure B-4) (CMS, 2002).

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286 HEALTH LITERACY

TABLE B-5 How Organizations and Systems Might Act to Improve America’s Health Literacy

Insurers

• Provide insurance premium discounts and/or co-payment waivers to non-high school graduates who enroll in and successfully complete graduate equivalency diploma (GED) programs.

• Medicaid and Medicare could provide health education on common health problems to their enrollees at community-based courses and seminars around the nation.

• Tricare could sponsor health education seminars around the nation for military personnel and their dependents.

• Medicare, Medicaid, and Tricare insurance plans could all partner with community- based literacy enhancement programs, such as those operated by ProLiteracy, to provide literacy enhancement education to enrollees in those insurance plans.

Employers

• Partner with public school systems to enhance general literacy and biological science and health education in elementary and secondary schools.

• Partner with community-based literacy enhancement programs (e.g., ProLiteracy) to expand availability of such programs, many of which are currently oversubscribed and cannot meet community needs.

• Expand workplace literacy education programs to include an emphasis on health literacy.

• Fast food restaurants could provide education to employees regarding modes of transmission of infectious disease, thus improving both employees’ health literacy and sanitation in restaurants.

Advocacy Organizations

• Advocacy organizations for the elderly could provide health education courses and classes on common health problems of older persons, specifically designed for seniors with limited literacy skills.

• Professional advocacy organization could create a nationwide corps of volunteer physicians and other health professionals to teach health education and prevention topics in elementary and secondary schools across the nation.

• Professional health advocacy organizations could establish a well-publicized national health literacy bee, analogous to current national spelling or geography bees, in which children and adolescents would compete to demonstrate their knowledge of health information.

Governmental and Social Service Agencies

• Public housing facilities for the poor could provide health education videotapes for residents to view in their homes.

• Head Start and similar daycare programs could provide pediatric health education information to parents of enrolled children.

• Homeless shelters could provide health education. • Homeless shelters could link with community-based literacy programs to facilitate

entry of clients into those literacy programs.

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APPENDIX B 287

• Provide health information—perhaps via live speakers and/or video presentations— to individuals visiting agencies at which waiting times are typically extensive—e.g., motor vehicle department, welfare offices, post offices, etc.

• Prison systems could expand current inmate education programs to include greater emphasis on health topics.

Others

• Assisted living centers for the elderly could provide health education videotapes for residents to view in their homes.

• Health education messages could be displayed on the inside or bathroom stall doors in all public restrooms.

• Health messages, perhaps in quiz form, could be displayed on movie theater screens for the audience to view while waiting for the movie to begin.

• Sports celebrities could appear on national media to promote important health issues.

• Cell phone display screens could provide a “health tip of the day.”

TABLE B-5 Continued

FIGURE B-3 Number of Medicare enrollees. SOURCE: Number of Medicare Enrollees, by Age of Enrollee: Selected Calendar Years July 1, 1980–1999. Center for Medicare & Medicaid Services, Office of Information Services (http://hcms.hhs.gov/review/supp/table7b.pdf).

0

10

20

30

40

1980 1984 1986 1990 1996 1999

Year

M ill

io ns

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288 HEALTH LITERACY

By combining Medicare expenditure figures with results from the Na- tional Adult Literacy Survey (NALS), which indicate that 80 percent of persons over 65 have limited literacy skills, one can estimate that about 80 percent of Medicare beneficiaries—32 million individuals—have limited literacy skills. Thus, most of the $240 billion annual Medicare expenditures are related to providing benefits for persons with limited literacy. Address- ing the health literacy of Medicaid enrollees (Table B-5) can potentially result in substantial cost savings for the Medicare program.

Medicaid

The Medicaid program, funded by state and federal tax dollars, pro- vides medical insurance benefits for about 45 million persons, most of whom are poor (CMS, 2000). Total expenditures by the Medicaid system were $175 billion per year in 1998, accounting for about 15 percent of all health-care spending in the United States (Health Care Financing Adminis- tration, 2000). The cost of the Medicaid program is expected to grow to $444 billion by 2010 (Figure B-5).

FIGURE B-4 Federal spending for Medicare. Note that overall spending includes benefit dollars, administrative costs, and program integrity costs (federal spending only). SOURCE: Medicare Program Spending. Centers for Medicare and Medicaid Ser- vices, Office of the Actuary, June 2002 (http://www.cms.hhs.gov/charts/default.asp).

$241

$211

$132

$81

$50

$23

$3 $9

$0

$50

$100

$150

$200

$250

$300

1967 1972 1977 1982 1987 1992 1997 2001

Fiscal Year

D ol

la rs

in B

ill io

ns

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APPENDIX B 289

FIGURE B-5 Predicted Medicaid expenditures. SOURCE: Health Care Financing Administration. A Profile of Medicaid: Chart- book 2000, Section III. Medicaid Expenditures. Pp. 27–51 (http://www.cms.hhs. gov/charts/medicaid/2Tchartbk.pdf).

Spending is projected to grow to $444 billion in FY 2010

Share

State Federal

E xp

en di

tu re

s ($

, b ill

io ns

)

500

400

300

200

100

0 1998 2000 2002 2004 2006 2008 2010

Fiscal Year

FY 2010 Total = $444

The rate of limited literacy is high among Medicaid enrollees. A study of a random sample of Medicaid enrollees in Arizona (Weiss et al., 1994) found that the mean literacy skills of the enrollees were at just over grade- level 5. More than a quarter of subjects had reading skills at or below the fourth-grade level, in contrast to the eighth-grade average reading level of U.S. adults. Subjects in the study who indicated that their preferred lan- guage for reading was Spanish had their literacy skills assessed in Spanish, and their average reading level was at grade level 3.1.

The limited literacy skills of Medicaid enrollees are associated with high health-care costs. Indeed, in the Arizona study Medicaid recipients with the highest reading levels had average annual health-care costs of $2,969, similar to the $2,400 average cost of health care for all U.S. citizens at the time of the study. In contrast, those with reading levels at or below grade-level 3 had annual health-care costs averaging $10,688 (Weiss and Palmer, 2004). These results are remarkable, given that the subjects had relatively homogenous sociodemographic characteristics (all poor and un- employed or employed at very low-paying jobs), and the statistical relation-

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290 HEALTH LITERACY

ship between literacy and costs remained strong even after a multivariable analysis that accounted for education, gender, ethnic group, and preferred language. Thus, to the extent that interventions to improve health literacy (Table B-5) can reduce health-care costs, such interventions can potentially result in substantial cost savings for Medicaid programs.

Tricare

The Tricare program provides health insurance benefits for the nation’s military personnel (active- and non-active-duty) and their dependents. The program covers direct medical care, prescriptions, dental care, and a variety of other health-related benefits.

Tricare is an expensive program. Spending by the federal government for direct medical and administrative costs totaled $8.3 billion in 1998 for some 4 million Tricare enrollees (Stoloff et al., 2000).

As noted earlier, many military recruits have limited literacy skills. Given the association between limited literacy and higher health-care costs, and given the cost of the Tricare system, significant cost savings might accrue to the U.S. military if the health literacy skills of the military recruits were improved. Thus, the military is an entity with large potential gain from improvement in its members’ health literacy.

As mentioned, the military currently engages in literacy-skill enhance- ment for its recruits to enable them to function adequately in the roles as soldiers. Incorporating health knowledge within literacy training (Table B-5) might provide further benefit by reducing excess costs related to limited health literacy.

Employers

Business leaders have long recognized the need for literacy enhance- ment in the workforce, as workers’ limited literacy skills often interfere with productivity and safety (Rockefeller Foundation Conference Proceed- ings, 1989). This concern is of particular importance for businesses that employ large numbers of routine service providers and production workers, because these groups have an over-representation of undereducated indi- viduals (Reich, 1992). Some large employers already offer literacy training to their employees to address concerns about workplace literacy (Academy of Human Resource Development, 2000; Askov and Van Horn, 1993; National Institute for Literacy, 1994).

Businesses should also have an interest in health literacy because of its relationship to health-care costs. Government agencies have reported that nearly two-thirds of Americans under age 65 obtain health insurance through their workplace (Monheit and Vistnes, 1997), with more than 150

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APPENDIX B 291

million workers and dependents in the United States, and an additional 5 million retirees, receiving job-based health insurance benefits (Gabel et al., 2000). On average, health benefits currently cost employers about $1.29 per hour per employee (U.S. Department of Labor, 2002).

The result of these costs, based on recent data from the Agency for Healthcare Research and Quality (AHRQ), is that each year private em- ployers in the United States pay in the range of $350 billion to cover the cost of hospitalizations and physicians’ services for their employees and families (Table B-6) (AHRQ, 2000). Public employers, including federal, state, and local governments, pay approximately $60 billion dollars per year. These costs rise annually—an 8 percent increase in 2000 and an 11 percent increase in 2001—with similar increases anticipated in the future (Mercer, 2003). Health insurance premiums paid by employers increase at a faster rate than wages or overall inflation (Gabel et al., 2001). Indeed, the Health Care Financing Administration has estimated that by 2008, health- care spending in the United States will reach $2.2 trillion (CMS, 2003).

To the extent that improving literacy skills will reduce health-care costs, employers would benefit substantially from initiatives that improve worker literacy. This is especially true for employers with a workforce that includes large numbers of routine service and production workers, as these groups have high rates of limited literacy. Partners in such initiatives could

TABLE B-6 National Totals for Enrollees and Cost of Hospitalization and Physician Service Health Plans for the Private Sector, United States, 2000

Enrollee Category Total (in thousands of persons)

Total Enrollees 71,253 Active enrollees 64,284 Enrollees through COBRA 2,766 Retired enrollees 4,203

Costs Total (in millions of dollars)

Total Costs 349,612 Employer contribution single coverage 69,066 Employer contribution family coverage 191,916 Employee contribution single coverage 18,251 Employee contribution family coverage 70,379

SOURCE: Agency for Healthcare Research and Quality, Center for Cost and Financing Stud- ies. 2000 Medical Expenditure Panel Survey—Insurance Component (http://meps.ahrq.gov/ MEPSDATA/ic/2000/Tables_IV/TableIVA1.htm).

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292 HEALTH LITERACY

include not only employers, but also community-based literacy programs and local governments seeking to attract employers that would be drawn to communities with a more literate workforce.

An additional approach to improving workforce literacy, including health literacy, could focus on science education in secondary schools and universities, where most students currently are taught basic science facts, rather than applied health sciences—and many students study little or no science at all. Indeed, data from the National Center for Education Statis- tics indicate that only 75 percent of U.S. high school students take more than one science course. While biology is the most popular science course offered in high school (i.e., most students select biology as their one science course), only about 1 in 6 takes an advanced course in biology (National Center for Education Statistics, 2001). The result is that many, if not most, students, even some destined for a career in the health sciences, graduate from high schools without a substantive understanding of the anatomy, physiology, and etiology of common diseases like atherosclerosis, diabetes, and cancer. Incorporating an applied “health literacy approach” into sci- ence education in schools and universities could have a major benefit for improving the health literacy of the nation’s workforce and for reducing health-care expenditures for employers (Table B-5).

Advocacy Organizations

There are many national-level organizations with missions dedicated to improving opportunities and quality of life for their constituents. Of note, some of these organizations advocate on behalf of the groups with the highest rates of limited literacy—the elderly, Hispanics, and African Ameri- cans—and these organizations could implement programs to improve their constituents’ health literacy (Table B-5). Although not discussed here, there are also advocacy groups on both local and national levels that represent the other high-risk groups, such as other ethnic minority groups, immi- grants, the homeless, the poor, and prisoners.

Advocates for the Elderly

The most well known, and perhaps the most important, senior citizens’ advocacy group is the American Association of Retired Persons (now known only by the acronym AARP)—which represents over 35 million older Ameri- cans (AARP, 2002). In addition to general advocacy on behalf of the nation’s elderly, AARP places particular emphasis on health and the cost of health care for senior citizens.

Given the very high rate of limited literacy among older individuals, and relationship of those limited literacy skills to health status, health-care

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APPENDIX B 293

costs, employment opportunities, and quality of life, a focus on literacy— including health literacy—would advance AARP’s mission and improve quality of life for its constituents. Other senior citizens’ advocacy groups share similar goals.

Advocates for Hispanics

There are many advocacy organizations for Hispanics, but two stand out as particularly respected and influential: the National Council of La Raza and the Mexican American Legal Defense and Educational Fund. In addition, the National Hispanic Medical Association has particular interest in health-related issues, which could include health literacy.

National Council of La Raza

The National Council of La Raza is a private, nonprofit organization established in 1968. It has 270 formal affiliates in 40 states, and a much broader network of 20,000 groups and individuals nationwide. Its mission is to “improve life opportunities for Hispanic Americans” (National Coun- cil of La Raza, 2003). Life opportunities are diminished when individuals have limited literacy skills, and the literacy skills of Hispanics are currently the lowest of any major ethnic group in the United States (Table B-7). Enhancing literacy skills, including health literacy skills, as an area of em- phasis for the National Council of La Raza and similar organizations has the potential to improve economic opportunities and health care for His- panic Americans.

Mexican American Legal Defense and Educational Fund

The Mexican American Legal Defense and Educational Fund is a na- tional nonprofit organization whose mission includes assuring that “there are no obstacles preventing [the Latino] community from realizing its dreams . . .” (Mexican American Legal Defense and Educational Fund, 2003). Limited literacy is one such obstacle, and the Mexican American Legal Defense and Educational Fund could participate in efforts to enhance literacy and health literacy skills of Hispanics.

National Hispanic Medical Association

The National Hispanic Medical Association is an organization that represents Hispanic medical providers. The organization expresses a com- mitment to providing policy makers and health-care providers with expert medical information, and to supporting and strengthening delivery of health

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294 HEALTH LITERACY

services to Hispanic communities across the nation (National Hispanic Medical Association, 1997). Aiding in the improvement of health literacy for Hispanics would go hand in hand with these goals, and it would seem logical for the National Hispanic Medical Association to participate in health literacy efforts.

Advocates for African-Americans

African-Americans are also represented by a number of advocacy orga- nizations. Two of the most respected organizations are the National Asso- ciation for the Advancement of Colored People (NAACP) and the National Urban League. The National Medical Association, the organization that

TABLE B-7 Percentage of Adult Population Groups with Literacy Skills at NALS Levels 1 or 2

Percent

Group Level 1 Level 2

All NALS Respondents 22 28 Age

16–54 years 15 28 55–64 years 28 33 65 years and older 49 32

Highest Education Level Completed 0–8 years 77 19 9–12 years (no high school graduation) 44 37 High school diploma/GED (no college study) 18 37

Racial/Ethnic Group White 15 26 American Indian/Alaska Native 26 38 Asian Pacific Islander 35 25 Black 41 36 Hispanic (all groups) 52 26

Immigrants to U.S. (various countries of origin) 0–8 years of education prior to arrival in U.S. 60 31 9 + years of education prior to arrival in U.S. 44 27

SOURCE: Unadjusted averages of prose and document literacy scores on the NALS as re- ported on Tables 1.1A, 1.1B, 1.2A, and 1.2B in Kirsch I, Jungeblut A, Jenkins L, Kolstad A. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Washington, DC: National Center for Education Statistics, U.S. Department of Education; September, 1993, and on Table B3.13 in U.S. Department of Education. National Center for Education Statistics. English Literacy and Language Minorities in the United States, NCES 2001–464, by Greenberg E, Macías RF, Rhodes D, Chan T. Washington, DC: 2001.

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APPENDIX B 295

represents African-American physicians, also has a specific interest in the health status of African-American citizens.

NAACP

NAACP is the nation’s oldest and largest civil rights organization. NAACP has a specific health division, with goals that include “developing national health advocacy and education initiatives that promote equity in health status,” “sponsoring collaborative initiatives with other national and local health groups,” and “expanding outreach on health advocacy and awareness in communications” (NAACP, 2003). Assuring adequate health literacy as a component of initiatives meets all of those goals, and NAACP may thus be an effective advocate for enhancing health literacy among African Americans.

National Urban League

The National Urban League has affiliates in more than 100 cities in 24 states. While the organization’s goal is broadly aimed at enabling “African Americans to secure economic self-reliance, parity and power and civil rights,” its mission also includes a specific goal of “ensuring that our chil- dren are well educated” (National Urban League, 2002). Efforts to improve literacy in general, and health literacy in particular, would fall within the mission of the National Urban League.

National Medical Association

The National Medical Association represents the interests of more than 25,000 African-American physician and their patients. One of the organiza- tion’s key missions is “to improve the status of health and quality and availability of health care to African-American and underserved popula- tions” (National Medical Association, 2003). This mission would be en- hanced by efforts to improve health literacy.

Other Organizations and Systems

There are many other organizations and systems that provide services to groups with high rates of limited literacy. Among these are prison sys- tems and social service agencies that work with undereducated individuals. Professional organizations that represent health-care providers (in addition to the National Medical Association and National Hispanic Medical Asso- ciation) also have a role to play in improving health literacy (Table B-5).

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296 HEALTH LITERACY

Prison Systems

Inmates in most prisons already have access to literacy improvement programs. Given the large and growing size of the U.S. prison population, however, and the costs associated with providing health care to prisoners, incorporating health literacy content might enhance current literacy im- provement programs.

Social Service Agencies

Social service agencies in virtually all U.S. communities interact with low-literate individuals every day, because clientele of these agencies in- clude large numbers of unemployed persons with limited education. Some of these agencies, particularly adult education programs, focus on literacy enhancement as a core mission through adult basic education, GED pro- grams, and “English as a Second Language” programs.

The majority of individuals with limited literacy, however, do not enter such education programs. Rather their interaction with social service agen- cies is often through county and state public assistance programs, unem- ployment agencies, childcare programs, and others. These social service agencies spend large sums of money providing services to their clientele, and those sums might be reduced if clientele had better literacy skills that permitted easier entry into the workforce. To the extent that clientele of these agencies have chronic health problems—and many do—costs might further be reduced if clientele had better health literacy.

Public assistance, unemployment, and childcare agencies could link with local adult education programs, or with national literacy programs such as ProLiteracy America (Proliteracy Worldwide, 2002), to facilitate easy referral into literacy training programs. In fact, literacy training pro- grams could be located on site with, or in close geographic proximity to, a variety of social service agencies, including medical clinics whose clients might benefit from literacy enhancement. Such partnerships, some empha- sizing health literacy, are currently in place in a number of com- munities (Community Health Partners, 2003; El Paso Community College/ Community Education Program, 2001). More such partnerships should be encouraged.

Professional Associations

Finally, professional associations representing health-care providers have an interest in assuring and improving health and health care for indi- vidual patients. With evidence showing that limited literacy skills are asso- ciated with poorer health status, all professional associations representing

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APPENDIX B 297

health-care providers should have a de facto interest in improving health literacy.

Some professional associations, such as the American Medical Associa- tion, have already produced educational materials to enhance health pro- viders’ understanding of the health literacy problem and give them sugges- tions for how to more effectively communicate with patients (Weiss, 2003). The materials include educational monographs and videotapes, train-the- trainer programs, and outreach efforts to local medical societies. Other professional organizations, such as the American Academy of Neurology, the Virginia Medical Society, the Iowa Medical Society, and the Georgia Academy of Family Physicians have also developed programs, or are plan- ning to do so.

Additional efforts from professional associations could include lobby- ing efforts aimed at securing support for health literacy content in adult basic education programs. Finally, professional organizations could im- prove the public’s health literacy by working with school systems to de- velop and implement health education curricula for use in elementary and secondary schools.

CONCLUSION

The unique vocabulary and concepts of medicine make it difficult for many individuals to fully understand health information provided to them by clinicians. This lack of understanding translates into poor health lit- eracy—i.e., a limited ability to read, understand, and use health informa- tion to make effective health-care decisions and follow recommendations for treatment. While limited health literacy occurs in all segments of soci- ety, it is a particular problem for individuals with limited reading skills (i.e., limited general literacy).

Limited literacy is more prevalent in certain groups. These groups in- clude the elderly, racial and ethnic minorities, persons with limited educa- tion, immigrants, prisoners, the poor and homeless, and military recruits. In some of these groups, such as the elderly, certain ethnic minorities, and persons who did not complete school, the prevalence of limited literacy exceeds 80–90 percent.

Persons with limited general and health literacy, on average, have poorer health knowledge, poorer health status, and higher health-care costs than do persons with higher-level literacy skills. The relationship between limited literacy and poorer health and higher costs is strong and indepen- dent of other socioeconomic factors.

Based on results of the NALS, about half of U.S. adults have literacy skills that are inadequate to meet the demands of today’s health system. Health-care systems could address this problem through processes and poli-

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298 HEALTH LITERACY

cies that enhance employee awareness of patients’ health literacy skills, and by delivering information in ways that patients can understand.

A variety of public and private entities have a stake in the health literacy problem. These include health insurers, employers, and advocacy groups. Insurers have a stake in the problem because of the high cost of health care for persons with limited literacy. For example, because limited literacy skills are so common among the elderly, most of Medicare’s $240 billion annual budget goes to providing care for persons with limited literacy.

Employers, especially those that employ large numbers of underedu- cated service and production workers, also have a stake in health literacy. Employers pay the high cost of their employee’s health insurance benefits, and their businesses lose productivity due to higher rates of illness among employees with limited literacy.

REFERENCES

AARP. 2002. AARP Facts. [Online]. Available: http://www.aarp.org/what_is.html [accessed: August, 2003].

Academy of Human Resource Development. 2000. Workforce Development. Symposium 37 [concurrent Symposium Session at AHRD Annual Conference, March 8–12, 2000]. Ra- leigh-Durham, NC: Academy of Human Resource Development.

AHRQ (Agency for Healthcare Research and Quality, Center for Cost and Financing Stud- ies). 2000. Medical Expenditure Panel Survey—Insurance Component. [Online]. Avail- able: http://meps.ahrq.gov/MEPSDATA/ic/2000/Tables_IV/TableIVA1.htm [accessed August, 2003].

Askov EN, Van Horn B. 1993. Adult educators and workplace literacy: Designing customized basic skills instruction. Adult Basic Education. 3(2): 115–125.

CMS (Centers for Medicare and Medicaid Services). 2000. Medicaid Eligables—Fiscal Year 2000 by Maintenance Assistance Status and Basis of Eligability. [Online]. Available: http://www.cms.hhs.gov/medicaid/msis/00total.pdf [accessed: August, 2003].

CMS. 2002. Medicare Program Spending. [Online]. Available: http://www.cms.hhs.gov/charts/ series/sec3-a.ppt [accessed: August, 2003].

CMS. 2003. Health Accounts: Estimates. [Online]. Available: http://hcfa.gov/stats/NHE-proj/ [accessed: August, 2003].

Community Health Partners. 2003. A Partnership for Health. [Online]. Available: http:// chphealth.org/ [accessed: August, 2003].

El Paso Community College/Community Education Program. 2001. The El Paso Collabora- tive Health Literacy Curriculum. [Online]. Available: http://www.worlded.org/us/health/ docs/elpaso/index.htm [accessed: August, 2003].

Gabel J, Levitt L, Pickreign J, Whitmore H, Holve E, Hawkins S, Miller N. 2000. Job-based health insurance in 2000: Premiums rise sharply while coverage grows. Health Affairs. 19(5): 144–151.

Gabel J, Levitt L, Pickreign J, Whitmore H, Holve E, Rowland D, Dhont K, Hawkins S. 2001. Job-based health insurance in 2001: Inflation hits double digits, managed care retreats. Health Affairs. 20(5): 180–186.

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

APPENDIX B 299

Health Care Financing Administration. 2000. A Profile of Medicaid: Chartbook 2000. [Online]. Available: http://www.cms.hhs.gov/charts/medicaid/2Tchartbk.pdf [accessed: August, 2003].

Mercer, WM. 2000. 15th Annual Mercer/Foster Higgins National Survey of Employer-Spon- sored Health Plans. [Online]. Available: http://imercer.com/us/imercercommentary/BB- final.pdf [accessed: August, 2003].

Mexican American Legal Defense and Education Fund. 2003. Mission Statement. [Online]. Available: http://www.maldef.org/about/mission.htm [accessed: August, 2003].

Monheit AC, Vistnes JP 1997. MEPS Research Findings No. 2. Health Insurance Status of Workers and Their Families. Rockville, MD: Agency for Health Care Policy and Re- search.

NAACP (National Association for the Advancement of Colored People). 2003. NAACP Health Division Fact Sheet. [Online]. Available: http://www.naacp.org/programs/health/ FactSheet.shtml [accessed: August, 2003].

National Center for Education Statistics. 2001. The 1998 High School Transcript Study Tabulations: Comparative Data on Credits Earned and Demographics for 1998, 1994, 1990, 1987, 1982 High School Graduates. Washington, DC: U.S. Department of Educa- tion, Office of Educational Research and Improvement.

National Council of La Raza. 2003. Mission Statement. [Online]. Available: http://www. nclr.org/about/index.html [accessed: August, 2003].

National Hispanic Medical Association. 1997. Home Page. [Online]. Available: http://www. nhmamd.org [accessed: August, 2003].

National Institute for Literacy. 1994. What Kind of Adult Literacy Policy Do We Need If We Are Serious About Enabling Every Adult to Become a High Skills/High Wage Worker in the Global Economy? Washington, DC: National Institute for Literacy.

National Medical Association. 2003. National Medical Association Overview. [Online]. Avail- able: http://www.nmanet.org [accessed: August, 2003].

National Urban League. 2002. Mission Statement. [Online]. Available: http://www.nul.org/ about/mission.htm [accessed: August, 2003].

Proliteracy Worldwide. 2002. Proliteracy America. [Online]. Available: http://www. proliteracy.org/proliteracy_america/index.asp [accessed: August, 2003].

Reich RB. 1992. The Work of Nations: Preparing Ourselves for 21st Century Capitalism. New York: Vintage Press.

Rockefeller Foundation Conference Proceedings. 1989. Literacy and the Marketplace. New York: The Rockefeller Foundation.

Stoloff, PH, Lurie, PM, Goldmerg, L, Almendarez, M 2000. Evaluation of the TRICARE Program: FY 2000 Report to Congress. [Online]. Available: http://www.defenselink.mil/ pubs/tricare02202001.pdf [accessed: August, 2003].

U.S. Department of Labor. Bureau of Labor Statistics. 20002. Cost of Health Benefits in Private Industry, March 2002. [Online]. Available: http://www.bls.gov/opub/ted/2002/ jul/wk3/art01.htm [accessed: August, 2003].

Weiss BD. 2003. Health Literacy: A Manual for Clinicians. Chicago, IL: American Medical Association Foundation.

Weiss BD, Palmer R. 2004. Relationship between health care costs and very low literacy skills in a medically needy and indigent Medicaid population. Journal of the American Board of Family Practice. 17(1): 44–47.

Weiss BD, Blanchard JS, McGee DL, Hart G, Warren B, Burgoon M, Smith KJ. 1994. Illit- eracy among Medicaid recipients and its relationship to health care costs. Journal of Health Care for the Poor & Underserved. 5(2): 99–111.

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301

C

Sample Material from Selected Assessments of

Literacy and Health Literacy

This appendix presents background and sample items from some of the measures that have been discussed in this report. For more information about the development and use of these measures, please

see Chapter 2.

CONTENTS

Rapid Estimate of Adult Literacy in Medicine 302 Excerpts from the Test of Functional Health Literacy in Adults 304 Excerpts from the National Adult Literacy Survey 308

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302 HEALTH LITERACY

RAPID ESTIMATE OF ADULT LITERACY IN MEDICINE (REALM)©

TABLE C-1 REALM

Patient Name/ Date of Reading Subject # ________________________ Birth ___________ Level __________________

Date _________ Clinic __________ Examiner__________ Grade Completed _____________

List 1 List 2 List 3

Fat Fatigue Allergic Flu Pelvic Menstrual Pill Jaundice Testicle Dose Infection Colitis Eye Exercise Emergency Stress Behavior Medication Smear Prescription Occupation Nerves Notify Sexually Germs Gallbladder Alcoholism Meals Calories Irritation Disease Depression Constipation Cancer Miscarriage Gonorrhea Caffeine Pregnancy Inflammatory Attack Arthritis Diabetes Kidney Nutrition Hepatitis Hormones Menopause Antibiotics Herpes Appendix Diagnosis Seizure Abnormal Potassium Bowel Syphilis Anemia Asthma Hemorrhoids Obesity Rectal Nausea Osteoporosis Incest Directed Impetigo

SCORE List 1 __________________ List 2 __________________ List 3 __________________

Raw Score _____________

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APPENDIX C 303

Directions:

1. Give the patient a laminated copy of the REALM and score an- swers on an unlaminated copy that is attached to a clipboard. Hold the clipboard at an angle so that the patient is not distracted by your scoring procedure. Say:

“I want to hear you read as many words as you can from this list. Begin with the first word on List 1 and read aloud. When you come to a word you cannot read, do the best you can or say “blank” and go on to the next word.”

2. If the patient takes more than five seconds on a word, say “blank” and point to the next word, if necessary, to move the patient along. If the patient begins to miss every word, have him or her pronounce only known words.

3. Count as an error any word not attempted or mispronounced. Score by marking a plus (+) after each correct word, a check (�) after each mispronounced word, and a minus (–) after words not attempted. Count as correct any self-corrected word.

4. Count the number of correct words for each list and record the numbers in the “SCORE’ box. Total the numbers and match the total score with its grade equivalent in the table below (Table C-2).

Excerpts taken from: Davis TC, Crouch MA, Long SW. 1993. Rapid Estimate of Adult Literacy in Medicine: A Shortened Screening Instrument. Louisiana State University. Re- printed with permission.

TABLE C-2 Scores and Grade Equivalents for the REALM

GRADE EQUIVALENT Raw Score Grade Range

0–18 3rd Grade and below • Will not be able to read most low literacy materials; will need repeated oral instructions, materials composed primarily of illustrations, or audio or videotapes

19–44 4th to 6th Grade • Will need low literacy materials; may not be able to read prescription labels

45–60 7th to 8th Grade • Will struggle with most patient education materials; will not be offended by low literacy materials

61–66 High School • Will be able to read most patient education materials

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304 HEALTH LITERACY

EXCERPTS FROM THE TEST OF FUNCTIONAL HEALTH LITERACY IN ADULTS

Numeracy

The numeracy section of the TOFHLA measures the patient’s ability to understand and act on numerical directions given by a health-care provider or pharmacist. The test items reproduce real-life situations in receiving, following, and paying for medication plans. The numeracy section uses a series of prompts to which the patient responds. These prompts consist of prescription vials, an appointment slip, a chart describing eligibility for financial aid, and an example of results from a medical test. The patient is handed the prompt for each question, the administrator reads each ques- tion, and the responses are recorded.

Sample Items

At the beginning of this section, the following introduction is read: “These are directions you or someone else might be given at the hospital. Please read each direction to yourself. Then I will ask you some questions about what it means.” For the first few questions in this section the patient is given Prompt 1, a prescription bottle that has the label shown in Figure C-1 below taped to it.

GARFIELD IM 16 Apr 93 FF941858 Dr. Lubin, Michael

PENICILLIN VK 250MG 40/0 Take one tablet by mouth four times a day 02 (4 of 40)

FIGURE C-1 Prompt 1 for TOFHLA. Prescription label that should taped onto an actual prescription bottle that can be handed to the patient to read.

Questions for Prompt 1:

If you take your first tablet at 7:00 am, when should you take the next one?

And the next one after that?

What about the last one for the day, when should you take that one?

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APPENDIX C 305

At the end of the numeracy section, the patient is given Prompt 10, a laminated card with information shown in Figure C-2 below.

You can get care at no cost if after deductions your monthly income and other resources are less than:

$581 for a family of one $1,196 for a family of four $786 for a family of two $1,401 for a family of five $991 for a family of three $1,606 for a family of six.

FIGURE C-2 Prompt 10 for TOFHLA. Laminated card with financial informa- tion about clinic services.

Question for Prompt 10:

Let’s say that after deductions, your monthly income and other resources are $1,129. And, let’s say you have 3 children. Would you have to pay for your care at that clinic?

Reading Comprehension

The reading comprehension section of the TOFHLA measures a patient’s ability to read passages using real materials from the health-care setting using a modified Cloze procedure. Passages included come from instructions for preparation for an upper GI series, the patient rights and responsibilities section of a Medicaid application form, and standard hospi- tal informed consent language.

Sample Items

At the beginning of the reading comprehension section of the TOFHLA, the following instructions are read:

Here are some other medical instructions that you or anybody might see around the hospital. These instructions are in sentences that have some of the words missing. Where a word is missing, a blank line is drawn, and 4 possible words that could go in the blank appear just below it. I want you to figure out which of those 4 words should go in the blank, which word makes the sentence make sense. When you think you know which one it is, circle the letter in front of that word, and go on to the next one. When you finish the page, turn the page, and keep going until you finish all the pages.

The reading comprehension section consists of three passages; one of these passages is shown on the next page.

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306 HEALTH LITERACY

PASSAGE B: Medicaid Rights and Responsibilities

I agree to give correct information to __________ if I can receive Medicaid. a. hair b. salt c. see d. ache

I _________ to provide the county information to ___________ any a. agree a. hide b. probe b. risk c. send c. discharge d. gain d. prove

statements given in this ________________ and hereby give permission to a. emphysema b. application c. gallbladder d. relationship

the _______________ to get such proof. I _______________ that for a. inflammation a. investigate b. religion b. entertain c. iron c. understand d. county d. establish

Medicaid I must report any ______________ in my circumstances a. changes b. hormones c. antacids d. charges

within __________ (10) days of becoming ___________ of the change. a. three a. award b. one b. aware c. five c. away d. ten d. await

I understand __________ if I DO NOT like the ____________ made on my a. thus a. marital b. this b. occupation c. that c. adult d. than d. decision

case, I have the ____________ to a fair hearing. I can _____________ a a. bright a. request b. left b. refuse c. wrong c. fail d. right d. mend

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APPENDIX C 307

hearing by writing or _____________ the county where I applied. a. counting b. reading c. calling d. smelling

If you __________ AFDC for any family ____________, you will have to a. wash a. member, b. want b. history, c. cover c. weight, d. tape d. seatbelt,

_____________ a different application form. _____________, we will use a. relax a. Since, b. break b. Whether, c. inhale c. However, d. sign d. Because,

the __________ on this form to determine your _______________. a. lung a. hypoglycemia. b. date b. eligibility. c. meal c. osteoporosis. d. pelvic d. schizophrenia.

Excerpts taken from: Nurss JR, Parker RM, Williams MV, Baker DW. 2001. Test of Functional Health Literacy in Adults. Available from Peppercorn Books and Press, Inc. Re- printed with permission.

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308 HEALTH LITERACY

EXCERPTS FROM THE NATIONAL ADULT LITERACY SURVEY

Prose Literacy and Sample Items

Prose refers to any written text such as editorials, news stories, poems, and fiction, and can be broken down into two types: expository prose and narrative prose. Expository prose consists of printed information that de- fines, describes, or informs, such as newspaper stories or written instruc- tions. Narrative prose tells a story. Prose varies in its length, density, and structure (e.g., use of section headings or topic sentences for paragraphs). Prose literacy tasks include locating all the information requested, integrat- ing information from various parts of a passage of text, and writing new information related to the text.

Prose Literacy Levels

Adults included in level 1 were those who could succeed at level 1 tasks, but not at level 2 tasks, as well as those who could not succeed at level 1 tasks and those who were not literate enough in English to take the test at all. Adults in levels 2 through 4 were able to succeed at tasks at their proficiency level, but not at tasks for the next more difficult level. Adults in level 5 are able to succeed at level 5 tasks.

Prose Level 1. Level 1 prose literacy tasks required a person to read a short passage of text and locate a single piece of information that is identi- cal to or synonymous with the information given in the question. If plau- sible but incorrect information was present in the text, it tended not to be located near the correct information.

Sample Prose Item (Level 1): Swimmer Article: Locate Fact with No Distractor

Task: Use the article “Swimmer completes Manhattan marathon” (See Fig- ure C-3) to answer the following question.

Underline the sentence that tells what Ms. Chanin ate during the swim.

The answer is correct if respondent underlines, circles, or puts a mark next to the sentence beginning A Spokesman for the Swimmer, or under- lines, circles, or puts a mark next to any part of the sentence that just lists the foods.

This level 1 task asks respondents to read a newspaper article about a marathon swimmer and to underline the sentence that tells what she ate

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APPENDIX C 309

FIGURE C-3 Article “Swimmer completes Manhattan marathon” used in NALS.

during a swim. Only one reference to food is contained in the passage, and it does not use the word “ate.” Rather, the article says the swimmer “kept up her strength with banana and honey sandwiches, hot chocolate, lots of water and granola bars.” The reader must match the word “ate” in the directive with the only reference to foods in the article.

Prose Level 2. Prose literacy tasks at level 2 required a person to locate a single piece of information in the text, compare and contrast easily identifi- able information based on criteria provided in the question, or integrate two or more pieces of information, when distractors were present or when low level inferences were required.

Sample Prose Item (Level 2): Swimmer Article: Locate Fact with Distractor

Task: Use the article “Swimmer completes Manhattan marathon” (see Fig- ure C-3 above) to answer the following question.

At what age did Chanin begin swimming competitively?

Acceptable responses are underlining or circling age or the sentence con- taining the age in the article.

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310 HEALTH LITERACY

This level 2 task requires the reader to locate information in the text. The reader is asked to identify the age at which the marathon swimmer began to swim competitively. The article first provides the swimmer’s cur- rent age of 23, which is a plausible but incorrect answer. The correct information, age 15, is found toward the end of the article.

Prose Level 3. Prose literacy tasks at level 3 required a person to match literal or synonymous information in the text with that requested in the question, to integrate multiple pieces of information from dense or lengthy text, or to generate a response based on information that could be easily identified in the text. Distracting information was present, but was not located near the correct information.

Sample Prose Item (Level 3): Discrimination Article

Task: Refer to the article below (Figure C-4) to answer this question.

List two things that Chen became involved in or has done to help resolve conflicts due to discrimination.

The answer is correct if the respondent lists any two of the following:

• worked for EEO Commission or was litigator on behalf of plain- tiffs who experienced discrimination

• served on Philadelphia Commission on Human Relations or worked with community leaders (to resolve racial and ethnic tensions)

• contributed free legal counsel (to a variety of activist groups) • called for a meeting of community leaders to help resolve conflict

over desecration of Korean street signs • involved in Hispanic, Jewish, and black issues • involved in Ethnic Affairs Committee of Anti-Defamation League

of B’nai B’rith or just B’nai B’rith

This level 3 item requires the reader to read a magazine article about an Asian-American woman and to provide two facts that support an inference made from the text. The question directs the reader to identify what Ida Chen did to help resolve conflicts due to discrimination.

Prose Level 4. Prose literacy tasks at level 4 required a person to search through text and match multiple features, and to integrate or synthesize multiple pieces of information from complex or lengthy passages. More complex inferences were required, and conditional information had to be taken into consideration for these tasks.

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APPENDIX C 311

FIGURE C-4 Discrimination article used in NALS.

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312 HEALTH LITERACY

Sample Prose Item (Level 4): Korean Jet Article

Task: This question directs the reader to state what argument Tom Wicker is making in the editorial below (Figure C-5).

In this level 4 item, the answer is correct if the argument is identified and respondents make a statement about the author’s main point. Answers were marked incorrect if the argument was not identified, respondents wrote what the article was about, or listed evidence without stating the argument. Answers that used the prompt as a basis for personal digression were also marked incorrect. The item is reflective of other tasks at this level of difficulty, which often have repetitive statements that are elaborated in the text so that the propositions supporting the theme, though repetitive, are widely separated in the text.

Prose Level 5. Prose literacy tasks at level 5 required a person to search through text and match multiple features contained in dense text with a number of plausible distractors, to compare and contrast complex informa- tion, or to generate new information making high-level inferences or using specialized background knowledge.

Document Literacy and Sample Items

Documents are short forms or graphically displayed information found in everyday life, including job applications, payroll forms, transportation schedules, maps, tables, and graphs. Document literacy tasks included lo- cating a particular intersection on a street map, using a schedule to choose the appropriate bus, or entering information on an application form.

Document Literacy Levels

Adults included in level 1 were those who could succeed at level 1 tasks, but not at level 2 tasks, as well as those who could not succeed at level 1 tasks and those who were not literate enough in English to take the test at all. Adults in levels 2 through 4 were able to succeed at tasks at their proficiency level, but not at tasks for the next more difficult level. Adults in level 5 are able to succeed at level 5 tasks.

Document Level 1. Document literacy tasks at level 1 required a person to locate information based on a literal match to the question or to enter information from personal knowledge into a document. Little, if any, dis- tracting information was present.

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APPENDIX C 313

FIGURE C-5 Korean jet article used in NALS.

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314 HEALTH LITERACY

FIGURE C-6 Job application used in NALS.

Sample Document Item (Level 1): Job Application (Figure C-6)

Task: The answer is correct if the respondent satisfactorily completes the

form portion (birth date, age, sex, height, weight, health, grade). In this task, readers were asked to complete a section of a job applica-

tion by providing several pieces of information. Here, respondents had to conduct a series of one-feature matches.

Sample Document Item (Level 1): Net Pay

Task: Here is a wage and tax statement that comes with a paycheck (Figure C-7). What is the current net pay?

The correct answer to this item is: 459.88. This level 1 question asks, “what is the current net pay?” Since the term

appears only once on the pay stub and there is only one number in the column, this task requires only a one-feature match and receives a difficulty value that lies within the level 1 range on the document scale.

Document Level 2. Document literacy tasks at level 2 required the reader to match a piece of information either when several distractors were present

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APPENDIX C 315

FIGURE C-7 Wage and tax statement used in NALS.

or when low-level inferences were required. Tasks at this level also asked the reader to cycle through information in a document or to integrate information from various parts of a document.

Sample Level 2 Item

Task: You are a marketing manager for a small manufacturing firm. This graph (Figure C-8) shows your company’s sales over the last three years. Given the seasonal pattern shown on the graph, predict the sales for Spring 1985 (in thousands) by putting an “x” on the graph.

The answer is correct if the respondent puts an “x” or other mark on the graph at any point above the point for Winter, 1984, in the area under 1985.

This level 2 task asks respondents to study a line graph showing a company’s seasonal sales over a three-year period, then predict the level of sales for the following year, based on the seasonal trends shown in the graph. It requires readers to integrate information from different parts of the document by looking for similarities or differences.

Document Level 3. Document literacy tasks at level 3 required a person to integrate multiple pieces of information from one or more documents. Other tasks asked readers to cycle through complex tables or graphs and locate particular features. The displays contained information that was irrelevant or inappropriate to the task.

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Sample Level 3 Item: Energy Chart (Figure C-9)

Question: In the year 2000, which energy source is predicted to supply a larger percentage of total power than it did in 1971?

A Coal B Petroleum C Natural Gas D Nuclear Power E Hydropower F I don’t know The correct answer to this item is: D. Nuclear power. This level 3 task directs the reader to a stacked bar graph depicting

estimated power consumption by source for four different years. The reader is asked to select an energy source that will provide a larger percentage of total power in the year 2000 than it did in 1971. To succeed on this task, the reader must first identify the correct years and then compare each of the five pairs of energy sources given.

Document Level 4. Document literacy tasks at level 4 required a person to perform multiple-feature matches, cycle through documents, and integrate

FIGURE C-8 Sales graph used in NALS.

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APPENDIX C 317

information, all of which required high-level inferences. Many of these tasks required readers to provide numerous responses but did not designate how many responses were needed. Conditional information was also present in the tasks at this level and had to be taken into account by the reader.

Sample Level 4 Item: Bus Schedule (Figure C-10)

On Saturday afternoon, if you miss the 2:35 bus leaving Hancock and Buena Ventura going to Flintridge and Academy, how long will you have to wait for the next bus?

The correct answer to this item is: C. Until 3:35 p.m. This level 4 task combines many of the variables that contribute to

difficulty in level 5. These include multiple feature matching, complex dis-

FIGURE C-9 Energy chart used in NALS. SOURCE: U.S. Department of Interior United States Energy through the year 2000. BTU: Quantity of heat required to raise temperature of one pound of water one degree Fahrenheit. Copyright 1973 Congressional Quarterly Inc.

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FIGURE C-10 Bus schedule used in NALS.

plays involving nested information, numerous distracters, and conditional information that must be taken into account in order to arrive at a correct response. Using the bus schedule, readers are asked to select the time of the next bus on a Saturday afternoon, if they miss the 2:35 bus leaving Hancock and Buena Ventura going to Flintridge and Academy. Several departure times are given, from which respondents must choose the correct one.

Document Level 5. Document literacy tasks at level 5 required a person to search through complex displays that contained multiple distractors, to make high-level text-based inferences, and to use specialized knowledge. Tasks required readers to integrate information, compare and contrast data points, and to summarize the results.

Quantitative Literacy and Sample Items

Quantitative information may be displayed visually in graphs or charts or in numerical form using whole numbers, fractions, decimals, percent-

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APPENDIX C 319

ages, or time units (hours and minutes). These quantities appeared in both prose and document form. Quantitative literacy refers to locating quanti- ties, integrating information from various parts of a document, determining the necessary arithmetic operation, and performing that operation. Quanti- tative literacy tasks included balancing a checkbook, completing an order form, and determining the amount of interest paid on a loan.

Quantitative Literacy Levels

Adults included in level 1 were those who could succeed at level 1 tasks, but not at level 2 tasks, as well as those who could not succeed at level 1 tasks and those who were not literate enough in English to take the test at all. Adults in levels 2 through 4 were able to succeed at tasks at their proficiency level, but not at tasks for the next more difficult level. Adults in level 5 are able to succeed at level 5 tasks.

Quantitative Level 1. Quantitative literacy tasks at level 1 required a person to perform single, relatively simple arithmetic operations, such as addition, when the question included the numbers to be used and the arithmetic operation to be performed.

Sample Quantitative Item (Level 1): Adding Deposits (Figure C-11)

Task: You wish to use the automatic teller machine at your bank to make a deposit. Figure the total amount of the two checks being deposited. Enter the amount on the form in the space next to TOTAL.

The correct answer to this item is $632.19. This level 1 item is the least demanding task on the quantitative scale. It

requires the reader to total two numbers on a bank deposit slip. In this task, both the numbers and the arithmetic operation are judged to be easily identified and the operation involves the simple addition of two decimal numbers that are set up in column format.

Quantitative Level 2. Quantitative literacy tasks at level 2 required a person to locate numbers by matching the required information with that given, infer the necessary arithmetic operation, or perform an arithmetic opera- tion when the tasks specified the numbers and the operation to be per- formed. The quantities could be easily located in the text, and the operation could be determined from the format of the material.

Quantitative Level 3. Quantitative literacy tasks at level 3 required a person to locate numbers by matching the required information with that given, infer the necessary arithmetic operation and perform arithmetic operations

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FIGURE C-11 Bank deposit slip used in NALS.

on two or more numbers, or to solve a problem, when the numbers must be located in the text or document. The required operation(s) could be deter- mined from the arithmetic-relation terms used in the question.

Quantitative Level 4. Quantitative literacy tasks at level 4 required a person to perform two or more sequential arithmetic operations or a single arith- metic operation, when the quantities could be found in different displays, or when the operations had to be inferred from semantic information given or drawn from prior knowledge.

Sample Quantitative Item (Level 4): Unit Price (Figure C-12)

Task: Estimate the cost per ounce of the creamy peanut butter. Write your estimate on the line provided.

The correct answer to this item is: Any figure from 9 (.09) to 10 (.10). This level 4 item task requires the reader to select from two unit price

labels to estimate the cost per ounce of creamy peanut butter. To perform this task successfully, readers may have to draw some information from prior knowledge.

Level 4 tasks require either two sequential operations or the application

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APPENDIX C 321

FIGURE C-12 Peanut butter label used in NALS.

of a single higher level operation, such as multiplication. In this example, readers are shown a menu and are required to compute the cost of a specified meal and use multiplication to determine a ten percent tip.

Quantitative Level 5. Quantitative literacy tasks at level 5 required a person to perform multiple arithmetic operations sequentially, when the features of the problem had to be extracted from text; or when background knowl- edge was required to determine the quantities or operations needed.

Sample Quantitative Item (Level 5): Interest Charges (Figure C-13)

Task: Use the ad for Home Equity Loans to answer this question. You need to borrow $10,000. Explain to the interviewer how you

would compute the total amount of interest charges you would pay under this loan plan. Please tell the interviewer when you are ready to begin.

The answer is correct if the speaker explains the two basic steps in computing the total interest charges, i.e., the monthly payment ($156.77) times the number of payments (120) equals the total loan payment; the

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FIGURE C-13 Home equity loan advertisement used in NALS.

total loan payment minus the amount of the loan ($10,000) equals the total interest charges.

One of the most difficult tasks on the quantitative scale, this item requires readers to look at an advertisement for a home equity loan and then, using the information given, explain how they would calculate the total amount of the interest charges associated with the loan.

Excerpts taken from: National Center for Education and Statistics, U.S. Department of Education. Defining Literacy and Sample Items. [Online]. Available: http://nces.ed.gov/naal/ defining/defining.asp [accessed: October, 2003].

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323

D

Committee and Staff Biographies

David A. Kindig, M.D., Ph.D. (Chair), is Emeritus Professor of Population Health Sciences and Emeritus Vice Chancellor for Health Sciences at the University of Wisconsin-Madison. He is also Co-director of the Wisconsin Public Health and Health Policy Institute. He served as Vice Chancellor for Health Sciences at the University of Wisconsin-Madison (1980–1985), Di- rector of Montefiore Hospital and Medical Center (1976–1980), Deputy Director of the Bureau of Health Manpower, U.S. Department of Health, Education and Welfare (1976), and medical director of the National Health Service Corps (1971–1973). He served as Chair of the federal Council of Graduate Medical Education (1995–1997), President of the Association for Health Services Research (1997–1998), ProPAC Commissioner (1991– 1994) and Senior Advisor to Donna Shalala, Secretary of Health and Hu- man Services (1993–1995). In 1996 he was elected to the Institute of Medi- cine (IOM), National Academy of Sciences. Dr. Kindig received a B.A. from Carleton College and M.D. and Ph.D. degrees from the University of Chi- cago School of Medicine. His research interests include population health status, supply and distribution of health professionals, equity in health services, and physician and nurse executives. His current work derives from his 1997 book “Purchasing Population Health: Paying for Results.”

Dyanne D. Affonso, Ph.D., R.N., F.A.A.N., is Dean of the Faculty of Nurs- ing at the University of Toronto. She is a leading educator who has advo- cated for curricula reforms in the health sciences to produce culturally competent health professionals. She is a researcher in women’s health is-

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324 HEALTH LITERACY

sues, community-based interventions, and reducing health disparities through studies on testing community prenatal care programs for ethnically diverse women, post-partum depression screening among culturally diverse women, and school-based violence prevention program for ethnically di- verse children. She designed several DHSS-HRSA special projects to cus- tomize health-care services to immigrant and low-income families across the United States. She has participated in several National Institutes of Health (NIH) initiatives and review groups addressing the health needs of culturally diverse populations, specifically the National Cancer Institute’s (NCI’s) Special Population Networks and NCMH’s Centers for Reducing Health Disparities. A member of the IOM since 1994, she received her Ph.D. in clinical psychology from the University of Arizona, a master’s degree in nursing from the University of Washington, and a bachelor’s degree in nursing from the University of Hawaii.

Eric H. Chudler, Ph.D., is a Research Associate Professor in the Depart- ment of Anesthesiology at the University of Washington in Seattle, WA. His current research interests include how Parkinson’s disease affects the brain, how the brain processes pain signals, and how the nervous system reacts to nerve injury. Dr. Chudler creates neuroscience curricula, and provides in- formation to teachers and students (grades K-12) who want to learn more about the nervous system. He also created the Neuroscience for Kids website, funded by the NIH. Dr. Chudler received his M.S. and Ph.D. degrees from the Department of Psychology at the University of Washing- ton, and received his post-doctoral training from the NIH. He was also an Instructor in the Department of Neurosurgery at the Massachusetts Gen- eral Hospital in Boston.

Marilyn H. Gaston, M.D., is a past Assistant Surgeon General of the United States and Director of the Bureau of Primary Health Care of the Health Resources and Services Administration. Her career has focused on improv- ing the health of poor and minority families through the delivery of quality primary patient care through the provision of medical education, involve- ment in clinical research, and the administration of local and federal pro- grams directed to services to the underserved. Dr. Gaston is internationally recognized for her leadership in sickle cell disease. Through her work at the NIH, changes in management of children with this illness have resulted significantly in decreasing the morbidity and mortality in young children. Elected to the IOM in 1996, she frequently speaks on improving access to quality care, elimination of health disparities, African-American women’s health, sickle cell disease, and the health needs of youths.

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APPENDIX D 325

Cathy D. Meade, Ph.D., R.N., F.A.A.N., is Professor in the Department of Interdisciplinary Oncology, Division of Cancer Prevention and Control at the University of South Florida College of Medicine, and Director of the Education Program at the H. Lee Moffitt Cancer Center & Research Insti- tute. She also holds a joint appointment in the College of Nursing. She was one of the first investigators to conduct studies in the area of patient understanding identifying the mismatches between patients’ reading levels and the reading levels of health information. She has extensive experience in the development of relevant cancer communications and has produced numerous printed and electronic materials and media for lay and profes- sional audiences. Practical aspects of this work have been published widely to help professionals develop easy-to-understand educational materials and interventions. Her research interests center on crafting culturally, linguisti- cally, and literacy-appropriate health communications, creating sustained community-based cancer education, outreach, and screening initiatives for underserved priority populations, examining understanding of the clinical trial and informed consent process, and developing innovative cancer edu- cation and training programs to increase the number of researchers from underrepresented groups. Dr. Meade has served as a member on NCI’s work groups on Cancer and Literacy, and Informed Consent in Cancer Clinical Trials for increasing awareness of the impact of literacy in health care. Dr. Meade also provides leadership for numerous education and training initiatives that address the nexus of cancer, culture, and literacy.

Ruth Parker, M.D., is Associate Professor of Medicine, and Associate Di- rector of Faculty Development for the Division of General Medicine at the Emory University School of Medicine. Her primary research interests are in medical education and health services of underserved populations. Dr. Parker has focused extensively on the health-care issues of underserved populations, particularly health literacy. She was principal investigator in the Robert Wood Johnson Literacy in Health Study, and worked with collaborators to develop the Test of Functional Health Literacy in Adults (TOFHLA), a measurement tool to quantify patients’ ability to read and understand health information. She is widely published in health literacy, and co-edited the complete bibliography of medicine on health literacy for the National Library of Medicine. She is chair of the American Medical Association (AMA) Foundation steering committee for the national pro- gram on health literacy, a member of the ACP Foundation Health Commu- nication Intiative Committee, and former chair of the AMA expert panel for the Council of Scientific Affairs.

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326 HEALTH LITERACY

Victoria Purcell-Gates, Ph.D., is a Professor of Literacy and Teacher Educa- tion at Michigan State University, where she teaches courses in literacy teaching and research. A former middle and high school teacher, Purcell- Gates had directed literacy centers for children needing help with reading and writing at both the University of Cincinnati and Harvard University. She studies literacy acquisition and development in the context of families, communities, and schools. As part of this, she studies the influence of culture, class, gender, and SES on literacy development and on access to literacy learning in schools. She has just concluded a longitudinal experi- mental study of text genre instruction in second- and third-grade science classes, sponsored by the National Science Foundation and IERI. Her latest book (Print Literacy Development), to be issued by Harvard University Press in 2004, is based on a multiyear study of relationships between adult literacy instructional factors and change in home literacy practices, spon- sored by the National Center for the Study of Adult Literacy and Learning. Her teaching experience has been primarily with children and adults who have experienced difficulty learning to read and write in school.

Irving Rootman, Ph.D., is Professor and Michael Smith Foundation for Health Research Distinguished Scholar in the Faculty of Human and Social Development at the University of Victoria in British Columbia, Canada, and was Professor of Public Health Sciences and Director of the Centre for Health Promotion at the University of Toronto. He was Director of the Health and Welfare Canada Program Resources Division and Chief of Health Promotion Studies in the Health Promotion Directorate, and Chief of Epidemiological and Social Research in the Non-Medical Use of Drugs Directorate. He has acted as Senior Scientist, consultant, and technical advisor for the World Health Organization (WHO), and chaired the WHO- EURO Working Group on Health Promotion Evaluation. He has published widely in the field of health promotion, and co-authored a book entitled People-Centred Health Promotion. Dr. Rootman serves on the Health Pro- motion and Disease Prevention Board of the IOM and is a former member of the Canadian Minister of Health’s Science Advisory Board.

Rima Rudd, Sc.D., is Senior Lecturer on Society, Human Development, and Health at the Harvard University School of Public Health. She is a public health educator and her work centers on health communication and on the design and evaluation of public health community-based programs. She teaches graduate courses on health literacy, innovative strategies in health education, and program planning and evaluation. Dr. Rudd’s current re- search is focused on health disparities and on literacy-related barriers to health programs, services, and care. She works closely with the adult educa- tion, public health, and medical sectors. She is a research fellow of the

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APPENDIX D 327

National Center for the Study of Adult Learning and Literacy and is Princi- pal Investigator (PI) for the Health and Adult Literacy studies. Dr. Rudd also serves as PI for the Literacy in Arthritis Management: A Randomized Controlled Trial of a Novel Patient Education Intervention with the RB Brigham Arthritis and Musculoskeletal Diseases Clinical Research Center and a co-PI on Pathways Linking Education to Health Study with col- leagues at the Harvard School of Public Health. She worked with Drs. Kirsch and Yamamoto of the Educational Testing Services (ETS) to develop a Health Activities and Literacy Scale that provides baseline data for health literacy assessment and discussed in a forthcoming ETS policy report. Dr. Rudd authored the action plan for the health literacy objective in Health People 2010.

Susan C. Scrimshaw, Ph.D., is Dean of the School of Public Health and Professor of Community Health Sciences and Anthropology at the Univer- sity of Illinois at Chicago. Dr. Scrimshaw has worked widely with diverse populations in cross-cultural settings in the fields of medical and applied anthropology, demography, culture change, and population health. An in- volved IOM Member, Dr. Scrimshaw has served on the IOM Board on International Health and the IOM Panel on Cancer Research among Mi- norities and the Medically Underserved. She is Member of the Task Forces on Community Preventive Services and on Violence Prevention at the Cen- ters for Disease Control and Prevention, and Member of the Executive Council of the Illinois Department of Public Health. Dr. Scrimshaw has worked extensively with city, state, governmental, national, and United Nations agencies. She has been honored by the American Anthropological Association and the Society for Applied Anthropology with the Margaret Mead Award for outstanding achievement in bringing anthropology to a wider audience.

William Smith, Ed.D., is Executive Vice President and Senior Social Scien- tist of Development Program Services at the Academy of Educational De- velopment (AED). Dr. Smith supervises programs of communication and marketing for social change, and serves as senior scientist for the develop- ment of behavior change programs at AED, publishing and speaking to policy-making audiences around the world. He often acts as consultant to international organizations including UNICEF and WHO, as well as na- tional departments of health and the Centers for Disease Control and Pre- vention. Dr. Smith is recognized as one of the leading specialists in the application of social marketing to social change, and he is co-founder of the Institute for Social Marketing. He has designed, supervised, and evaluated social marketing and communication campaigns on HIV/AIDS prevention in 22 countries, and infant and maternal health in 35 countries of the world.

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328 HEALTH LITERACY

IOM Staff

Lynn T. Nielsen-Bohlman, Ph.D., is a Senior Program Officer in the Board on Neuroscience and Behavioral Health. Dr. Nielsen-Bohlman’s research focused on human distributed cortical networks in working memory and attention, and their modulation by arousal, aging, cortical and subcortical degeneration, and cortical lesion. Her studies on the differential involve- ment of anterior and posterior cortices in working memory provided the first evidence of a distributed working memory network in humans. Dr. Nielsen-Bohlman received her Ph.D. in physiology from the University of California at Davis in 1994. She was a postdoctoral fellow at the University of California, Berkeley, and the University of California, San Francisco, Assistant Professor of Psychiatry at Vanderbilt University, and a Psychol- ogy Department faculty member at Belmont University and the University of Maryland University College. She is the Study Director for the Commit- tee on Health Literacy, and has worked in science and education outreach for two decades.

Allison M. Panzer is a Research Assistant in the Board on Neuroscience and Behavioral Health, and has worked on studies of the pathophysiology and prevention of adolescent and adult suicide and how to optimize the public health response to long-term and short-term mental health consequences of terrorism. This work has contributed to two IOM reports: Reducing Sui- cide: A National Imperative and Preparing for the Psychological Conse- quences of Terrorism: A Public Health Strategy. Allison received her Bachelor’s Degree from Wesleyan University with coursework in psychol- ogy, sociology, and neuroscience, and has pursued postgraduate studies while at the National Academies.

Benjamin N. Hamlin, Research Assistant at IOM, received his bachelors in Biology from the College of Wooster in 1993 and a degree in health sci- ences from the University of Akron in 1996. He joined the National Acad- emies in 2000 as a Research Assistant for the Division on Earth and Life Studies. His work at IOM has included Testosterone and Aging: Clinical Research Directions; Review of NASA’s Longitudinal Study of Astronaut Health; Health Literacy: A Prescription to End Confusion; Improving Medi- cal Education: Enhancing the Behavioral and Social Science Content in Medical School Curricula; and NIH Extramural Center Programs: Criteria for Initiation and Evaluation.

Allison L. Berger is a Project Assistant in the Board on Neuroscience and Behavioral Health. She is currently working on two IOM studies: Health Literacy and Introducing Behavioral and Social Sciences into Medical

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APPENDIX D 329

School Curricula. Before joining the IOM staff, she enjoyed a 5-year tenure as an Administrative Assistant for the American Psychological Association (APA) where she assisted the APA Committee on Psychological Test and Assessment, Committee on Scientific Awards, and the Committee on Ani- mal Research and Ethics. She also worked on several funding and grant programs sponsored by the APA Science Directorate.

Andrew M. Pope, Ph.D., is Director of the Board on Neuroscience and Behavioral Health, and Director of the Board on Health Sciences Policy at IOM. With a Ph.D. in physiology and biochemistry, his primary interests focus on environmental and occupational influences on human health. Dr. Pope’s previous research activities focused on the neuroendocrine and re- productive effects of various environmental substances in food-producing animals. During his tenure at the National Academy of Sciences and since 1989 at IOM, Dr. Pope has directed numerous studies; topics include injury control, disability prevention, biologic markers, neurotoxicology, indoor allergens, and the enhancement of environmental and occupational health content in medical and nursing school curricula. Most recently, Dr. Pope directed studies on NIH priority-setting processes, organ procurement and transplantation policy, and the role of science and technology in countering terrorism.

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331

Index

A

AARP, 119, 292–293 ABEL. See Adult basic education and

literacy system Aboriginal people, cultural language of,

114–115 Academy for Educational Development,

153 Academy of General Dentistry, 193 Access to health care and preventive

services, 179–180 See also Language access

Accreditation Council for Continuing Medical Education (ACCME), 159

Accreditation of health systems Joint Commission on Accreditation of

Healthcare Organizations, 14, 16, 55, 199, 228

National Committee for Quality Assurance, 14, 16, 55, 199–201, 228, 278

Accreditation of medical education Accreditation Council for Continuing

Medical Education, 159 Ad Hoc Committee on Health Literacy,

36 Adult Basic Education and Literacy

(ABEL) system, 10, 154

Adult education system, 154–157 context of, 154–155 incorporating health content into,

156–157 strategies and opportunities in, 155–157

Adult Literacy & Lifeskills Survey (ALL), 62

Adult population groups percentage with literacy skills at NALS

levels 1, 2, or 3-4, 64 percentage with literacy skills at NALS

levels 1 or 2, 294 Advertising and marketing

FDA involvement in, 194 a popular source of health

information, 123–124 Advocacy organizations, 292

for African-Americans, 294–295 for the elderly, 292–293 for Hispanics, 293–294 prison systems, 296 professional associations, 296–297 social service agencies, 296

African-Americans advocacy organizations for, 294–295 literacy proficiency among, 63 National Association for the

Advancement of Colored People, 294–295

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332 INDEX

National Medical Association, 295 National Urban League, 295

Agency for Healthcare Research and Quality (AHRQ), 14–15, 103, 127, 136, 183, 197, 205, 291

Agency for International Development (AID), 25

Agency roles, 191–201 AHRQ. See Agency for Healthcare

Research and Quality AID. See Agency for International

Development Alaska Natives, literacy proficiency

among, 63 ALL. See Adult Literacy & Lifeskills Survey Alzheimer’s Association of Los Angeles,

135 AMA. See American Medical Association American Academy of Neurology, 297 American Association of Family

Physicians Foundation, 26 American Cancer Society, 119 American Medical Association (AMA),

160, 193 Ad Hoc Committee on Health

Literacy, 36, 109 American Public Health Association, 160 Americans with Disabilities Act, 184n America’s health literacy

advocacy organizations, 286 employers, 286 governmental and social service

agencies, 286–287 insurers, 286 organizations and systems acting to

improve, 286–287 Approaches to improving health literacy,

127–137 approaches to increasing language

access, 136–137 collaborative programs, 134–136 community opportunities, 127, 132–133 nongovernmental organizations, 134

Asian Health Services, 133 “Ask Me 3” program, 160 Assessment Framework Matrix, 152 Assessment of health literacy, in

educational settings, 151–152 Assessments of literacy and health literacy

excerpts from the National Adult Literacy Survey, 308–322

excerpts from the Test of Functional Health Literacy in Adults, 304–307

Rapid Estimate of Adult Literacy in Medicine, 302–303

sample material from selected, 301–322 Association of American Colleges and

Universities, 147 Associations of limited health literacy, 6–

9, 59–107 associations with health knowledge,

behavior, and outcomes, 82–100 financial, 7–8, 100–103 in health knowledge, behavior, and

outcomes, 7, 82–100 Attaining Cultural Competency and

Enriching Health Service Solutions, 133

Awareness, cultural, 112

B

Background information, 250–254 Basic print literacy, 38–39 Bayer Corporation, 146 Behavior, associations of limited health

literacy with, 7, 82–100 Behavioral Health Risk Factor

Surveillance System (BHRFSS), 14, 53, 55

BHRFSS. See Behavioral Health Risk Factor Surveillance System

Billie, Alvin, 132 Bolivia, literacy proficiency in, 83 Bridging Disciplines in the Brain:

Behavioral and Clinical Sciences, 224

Building Effective AIDS Response initiative, 218

Bureau of Primary Health Care, 197, 219

C

CAHL. See Coalition for Allied Health Leadership

CAHPS. See Consumer Assessment of Health Plans Survey

Calculating literacy, 45 California HealthCare Foundation, 26 California Literacy, Inc., 160 California Medical Association (CMA), 160

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

INDEX 333

California Statewide Health Initiative, 160 Canada, literacy in, 61 Capacity, individual, 32 Care delivery, 269 Carmona, Richard H., 136 Carstairs Index, of social deprivation, 88–

89 Case studies. See Vignettes CDC. See Centers for Disease Control and

Prevention Center for Epidemiologic Studies

Depression Scale-Short Form, 96–97 Center for Health Services Research and

Policy, 200 Center for Linguistic and Cultural

Competence in Health Care, 114 Center for Youth Services, 134 Centers for Disease Control and

Prevention (CDC), 14–15, 103, 119, 136, 153, 161, 192, 195, 267

Health Communication Division, 218 “Programs-That-Work,” 148 School Health Policies and Programs

Study 2000, 143 Task Force on Guidelines for

Community Preventative Services, 127

Centers for Medicare & Medicaid Services (CMS), 100n, 135, 193–194

Centro Latino de Salud, Educación y Cultura, 133

Charlson Comorbidity Index, 90–91 Children’s Partnership, 124 Chronic Care Model, 173, 268–271, 274–

275, 279 shaping for patients with limited health

literacy, 274–277 Chronic disease care and self-

management, 171–173 chronic disease management program,

222 model for improvement of, 279

Chronic disease outcomes community and environmental factors,

274 effect of limited health literacy on,

270–274 home-based monitoring and clinical

support, 272–274 office-based clinician–patient

communication, 271–272

Civil Rights Act, 184n Clinician–patient communication, office-

based, 271–272 Cloze procedure, 48 CMA. See California Medical Association CMS. See Centers for Medicare and

Medicaid Services Coalition for Allied Health Leadership

(CAHL), 159 Collaborative programs, to improve health

literacy, 134–136 College and university health education,

147–148 Combined approaches, to health literacy

in the health system, 220–221 Comments, from respondents to

surveyors, 227 Commissioned papers and background

information, 250–299 approaches to improving health

literacy, 250–253 federal funding for health literacy over

a 10-year period, 254 field lessons, 250–253

Committee on Comprehensive School Health Programs in Grades K-12, 146

Committee on Health Literacy, 3, 26–27, 243

First Workshop hosted by, 246 Second Workshop hosted by, 248 Third Workshop hosted by, 249

Commonwealth fund, 26 Communication techniques

office-based clinician-patient, 271–272 personal, 219–220 technology-based, 215–218

Community-based interventions, published studies of, 128–133

Community factors effect on chronic disease outcomes,

274 opportunities to improve health

literacy, 127, 132–133 Complexity of health information, 122–

123 Components of literacy, 38 Conceptual framework for health literacy,

32–35 culture and society, 33–34 education system, 34–35

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Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

334 INDEX

health system, 35 potential points for intervention in the

health literacy framework, 34 Consumer Assessment of Health Plans

Survey (CAHPS), 98–99, 200 Consumer-directed health care, 182–183 Context of health systems, 168–201

emerging issues in the health system context, 171–183

health law and health literacy, 183–191 Contexts of health literacy and

opportunities for intervention, 9–12 culture and society, 9–10, 108 educational systems, 10–11, 142 health systems, 11–12, 167

Continuing education approaches, to educating health professionals, 159–160

Costs. See Health expenditures Council of Chief State School Officers,

State Collaborative on Assessment and Student Standards, 152

Council of State Governments, 198, 251 CRISP database, 195, 254 Crossing the Quality Chasm: A New

Health System for the 21st Century, 12, 26, 177, 228

Cultural competence, 112–113 cultural awareness, 112 cultural encounter, 112 cultural knowledge, 112 cultural skill, 112

Cultural languages, traditional, 114–115 Culture

dissociation of culture, meaning, and health literacy, measures for, 118– 119

language and meaning, in the context of health literacy, 115–118

mass culture, 119–126 meaning and language, in the context

of health literacy, 115–118 traditional culture, 110–119

Culture and society, 9–10, 108–141 health literacy in, 33–34 mass culture, 119–126 opportunities for intervention in, 9–10,

108 opportunities to improve health

literacy, 126–137 traditional culture, 110–119

Curricular approaches, to educating health professionals, 158–159

Curriculum Linking Science Education and Health Literacy program, 146, 153

Cycling literacy, 44

D

Data sources and methods, 243–254 commissioned papers and background

information, 250–254 literature review, 243–244 public workshops, 244–249 study committee, 243

Definition of health literacy, 31–37 conceptual framework for health

literacy, 32–35 scope of health literacy, 36–37

Definition of literacy, 37–40 basic print literacy, 38–39 components of literacy, 38 functionality of all literacy, 39–40 literacy for different types of text, 39

Demographic associations, with limited literacy, 62–65

Department of Cancer Control and Population Science, Portfolio Management Application software, 254

Disease registries, 269 Document literacy, and sample items from

the National Adult Literacy Survey, 312–319

E

“Ecology” of health service organizations, 169

Economic factors, and health, 20–21 Education for health professionals, 157–

160 continuing education approaches, 159–

160 curricular approaches, 158–159

Educational materials grade-level measures of, 47 tailored to health literacy in the health

system, 221–224

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Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

INDEX 335

Educational Resources Information Center (ERIC), 68, 127, 244

Educational systems, 10–11, 142–166 adult education system, 154–157 education for health professionals,

157–160 health literacy in, 34–35 K-12 and university education systems,

143–154 opportunities for intervention in, 10–

11, 142 recommendations, 161 strategies for health literacy

instruction, 149–151 Elderly people, advocacy organizations

for, 292–293 Emerging issues in the health system

context, 171–183 access to health care and preventive

services, 179–180 chronic disease care and self-

management, 171–173 consumer-directed health care, 182–

183 health expenditures, 181–182 limitations on provider time, 180–181 patient–provider communication, 173–

175 patient safety and health-care quality,

176–179 Employers, 290–292 Encounters, cultural, 112 England, literacy in, 61 Environmental factors, effect on chronic

disease outcomes, 274 Epidemiology of limited health literacy,

65–81 association of limited health literacy,

81–103 and health literacy skills among

various populations, 70–81 studies of limited health literacy, 67–

69, 80 ERIC. See Educational Resources

Information Center Evidence-based approaches, to improving

health literacy, 126–127 Excerpts

from the National Adult Literacy Survey, 308–322

from the Test of Functional Health Literacy in Adults, 304–307

Executive Order No. 13166, “Improving Access to Services for Persons with Limited English Proficiency, August 2000,” 114n

Expenditures. See Health expenditures Experiential identity, 111 Extent and associations of limited health

literacy, 6–9, 59–107 the associations of limited health

literacy, 81 the epidemiology of limited health

literacy, 65–81 literacy in America, 60–65 mock-up prescription medication

instructions in Bahasa Malaysia, the written language of Malaysia, 60

recommendation, 103

F

Family and friends, a popular source of health information, 125

FDA. See Food and Drug Administration Federal government, 191–198

Agency for Healthcare Research and Quality, 197

Centers for Disease Control and Prevention, 195

Centers for Medicare and Medicaid Services, 193–194

Department of Veterans Affairs, 197– 198

Food and Drug Administration, 194–195 funding for health literacy over a 10-

year period, 254 Health Resources and Services

Administration, 196–197 National Institutes of Health, 195–196 Office of the Secretary, Office of

Disease Prevention and Health Promotion, 192–193

Field lessons, 250–253 Financial associations, of limited health

literacy, 7–8, 100–103 First Workshop, hosted by the Committee

on Health Literacy, 246 Flesch-Kincaid Reading Grade Level, 47

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Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

336 INDEX

Flesch Scale Analysis, 201 Florida/Caribbean AIDS Education and

Training Center, 218 Food and Drug Administration (FDA),

192, 194–195 advertising, 194 labeling, 194 outreach, 194

Formulating literacy, 45 Foundation for Accountability, 183 Foundation for Informed Medical

Decision Making, 217 Friends, a popular source of health

information, 125 Fry Readability Scale, 47, 201 Functional literacy

functionality of all literacy, 39–40 measures of, 49–50

G

Gallup Organization polls, 121, 146 sources of health information reported

in, 121 Gathering Place, 132 Generating literacy, 45 Georgia Academy of Family Physicians,

297 Geriatric Depression Scale, 84–85, 88–89 GEs. See Grade Equivalents Governmental and agency roles, 191–201

roles of regulatory agencies, 199–201 roles of state governments, 198–199 roles of the federal government, 191–

198 Grade Equivalents (GEs), 46

for the REALM, 303 Grade-level measures of literacy, 45–47,

50 grade-level ability for individual

readers, 46–47 grade-level measures of materials, 47

Gunning Fog index, 50

H

Hablamos Juntos, 114–115 Harvard School of Public Health, 158 HCFA. See Health Care Financing

Administration

Health, social and economic factors in, 20–21

Health Assessment Questionnaire, 88–89 Health care

and informed consent in research, 187–190

predicted spending on, 262 quality of, 176–179

Health Care Financing Administration (HCFA), 100, 291

See also Centers for Medicare & Medicaid Services

Health-care settings, interventions in, 206–213

Health Communication Division (CDC), 218

Health content, incorporating into adult education programs, 156–157

Health contexts, literacy skill demands of, 41, 43

Health Education Assessment Project, 152

Health education programs K-12, 143–146 opportunities for, 148–149

Health expenditures, 181–182 “Health Framework for California’s

Public Schools, Kindergarten through Grade Twelve,” 153

Health Information National Trends Survey (HINTS), 121

Health information sources, 123–126 advertising and marketing, 123–124 family and friends, 125 the Internet, 125–126 news media, 123

Health information use, 120–126 complexity of materials, 122–123 selected findings from Sex Matters, 122 sources of health information reported

in a Gallup Poll, 121 Health Insurance Portability and

Accountability Act of 1996, 192 Health Interview Survey (HIS), 53 “Health is Strength” Project, 133 Health knowledge, associations of limited

health literacy with, 7, 82–100 Health law and health literacy, 183–191

doctrine of informed consent, 186–191 governmental and agency roles, 191–201 standard of reasonable care, 184–186

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INDEX 337

Health literacy, 4–6, 31–58 definition of, 31–37 framework for, 33 measures used in health literacy

research, 43–51 needs and opportunities, 51–55 new field of inquiry and practice, 20 opportunities to improve, 126–137 as a public concern, 25–26 sample material from selected

assessments of, 301–322 Health Literacy, Let Your Patients

Understand, 160 Health literacy approaches in the health

system, 204–225 combined approaches, 220–221 and in-sample prediction of total costs,

263 partnerships, 224–225 personal communication and

education, 219–220 provision of simplified/more attractive

written materials, 214–215 tailored materials, 221–224 technology-based communication

techniques, 215–218 Health Literacy Coalition, 160 Health Literacy Educational Kit, 160 Health literacy framework, potential

points for intervention in, 5, 34 Health literacy instruction, strategies for,

149–151 Health literacy measures, 50–51 Health literacy-related activities, frequency

of doing, 203 Health literacy skills

among various populations, epidemiology of, 70–81

health-related associations of, 84–99 Health-literate America, vision for, 12–14,

240–242 Health on the Net Foundation Code of

Conduct, 273 Health Professions Network, 159 Health-related associations, of health

literacy skills, 84–99 Health Resources and Services

Administration (HRSA), 14–15, 103, 136, 161, 196–197, 218–219, 226

Bureau of Primary Health Care, 219

Health service organizations, ecology of, 169

Health systems, 11–12, 167–239 context of, 168–201 emerging issues in, 171–183 health literacy in, 35 Joint Commission on Accreditation of

Healthcare Organzations, 14, 16, 55, 199, 228

National Committee for Quality Assurance, 14, 16, 55, 199–201, 228, 278

navigating, 172 opportunities in, 11–12, 167, 201–227

Healthcare processes, rules for redesigning, 178

Healthy People 2010 program, 4, 25, 31, 36–37, 125, 149, 192–193

“Healthy Reading Kits,” 153 Helling v. Carey, 186 HHS. See U.S. Department of Health and

Human Services Hidding v. Williams, 190 HINTS. See Health Information National

Trends Survey HIS. See Health Interview Survey Hispanics

advocacy organizations for, 293–294 cultural language of, 116–118 literacy proficiency among, 63 Mexican American Legal Defense and

Educational Fund, 293 National Council of La Raza, 293 National Hispanic Medical

Association, 293–294 HIV/AIDS Bureau, 197, 218 Home-based monitoring and clinical

support, effect on chronic disease outcomes, 272–274

Ho’oponopono process, 175 Hospital Anxiety and Depression Scale,

88–89 Howard, David H., 8, 101, 256–266 HRSA. See Health Resources and Services

Administration

I

IALS. See International Adult Literacy Surveys

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Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

338 INDEX

IDL. See Instrument for Diagnosis of Reading/Instrumento Para Diagnostical Lecturas

“Improving Access to Services for Persons with Limited English Proficiency, August 2000,” 114n

“Improving Chronic Disease Care for Populations with Limited Health Literacy,” 171n, 267–284

Chronic Care Model, 268–270 effect of limited health literacy on

chronic disease outcomes, 270–274 a framework based on health literacy

and related research, 271 measuring progress, 277–278 shaping the chronic care model for

patients with limited health literacy, 274–277

Improving Diabetes Efforts across Language and Literacy project, 218

Improving health literacy collaborative programs, 134–136 combined approaches, 220–221 community-based interventions, 128–

133 community opportunities, 127, 132–133 lessons from the field, 250–253 nongovernmental organizations, 134 promising approaches to, 127–137

Incollingo v. Ewing, 185 Increasing language access, approaches to,

136–137 Indian Health Service, 15, 136 Individual capacity, 32 Inflexxion® Incorporated, 153 Informed consent, 186–191

consent form, for participation in smoking cessation study, 216

difference between actual readability and target readability of documents, 188–189

in health care and research, 187–190 legal precedents, 190–191 texts provided by institutional review

boards at U.S. medical schools, 188 Institute for Healthcare Advancement, 134 Institute for Policy Innovation, 124 Institute of Medicine (IOM), 3, 9, 12–13,

20–21, 25, 101, 111, 115, 117, 168–169, 197, 224, 240, 244

Committee on Comprehensive School Health Programs in Grades K-12, 146

Institutional Review Boards, 16 Instrument for Diagnosis of Reading/

Instrumento Para Diagnostical Lecturas (IDL), 47, 65, 78–79, 100

Insurers, 285–290 Medicaid, 288–290 Medicare, 285, 287–288 Tricare, 285, 290

Integrating literacy, 44 Interagency Education Research Initiative,

15, 150–151, 161 International Adult Literacy Surveys

(IALS), 6, 45, 49, 52, 61 International Reading Association, 50 Internet, 119

a popular source of health information, 125–126

Intervention in the health literacy framework

opportunities for, 9–12 potential points for, 5, 34 samples of published studies of, 206–

213 IOM. See Institute of Medicine Iowa Medical Society, 297 Ireland, literacy in, 61

J

JCAHO. See Joint Commission on Accreditation of Healthcare Organizations

Joint Commission on Accreditation of Healthcare Organizations (JCAHO), 14, 16, 55, 199, 228

Joint Committee on National Health Standards, 11, 36, 144

Journal of the American Medical Association, 119

K

K-12 education, 143–147 health education programs,

143–146 literacy education, 147 science education, 146

Kellogg Foundation, 26 Knowledge, cultural, 112

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

INDEX 339

L

Labeling, FDA involvement in, 194 Language

and meaning, in the context of health, 115–118

patient perspectives and, 117–118 traditional, 113–114

Language access, approaches to increasing, 136–137

“Language Access: Helping Non-English Speakers Navigate Health and Human Services,” excerpt from introduction to, 136

Legal issues doctrine of informed consent, 186–191 governmental and agency roles, 191–

201 standard of reasonable care, 184–186

Legal precedents, 190–191 LEP. See Limited English proficiency Limitations of existing measures of health

literacy, 49–51 functional literacy measures, 49–50 grade-level scores, 50 health literacy measures, 50–51

Limitations on provider time, 180–181 Limited English proficiency (LEP), 113–

114 Limited health literacy, 6–9, 59–107

associations of, 7, 81–103 financial associations of, 7–8 studies of, 67–69, 80

Limited health literacy’s effect on chronic disease outcomes, 270–274

community and environmental factors, 274

home-based monitoring and clinical support, 272–274

office-based clinician-patient communication, 271–272

Limited literacy, demographic associations with, 62–65

Literacy components of, 38 for different types of text, 39 examples of skills needed for health,

42 in health contexts, 41–43 literacy skill demands of health

contexts, 41, 43

living in a society with high demands for, 21–25

sample material from selected assessments of, 301–322

Literacy education, K-12, 147 Literacy in America, 60–65

demographic associations with limited literacy, 62–65

extent and associations of, 60–65 Literacy surveys, 43–45

calculating, 45 cycling, 44 formulating, 45 generating, 45 integrating, 44 locating, 44

Literature review, 243–244 Locating literacy, 44

M

Maintenance-of-Effort (MOE) funds, 135 Managed Care Consumer Assistance

Program (MCCAP), 134 Managed care contracts, state Medicaid,

200–201 Marketing health information, 123–124 Mass culture, 119–126

advertising and marketing, 123–124 family and friends, 125 Internet, 125–126 news media, 123 ways people obtain and use health

information, 120–126 Materials

grade-level measures of, 47 tailored to health literacy in the health

system, 221–224 Maternal and Child Health Bureau, 197 MBS. See Medicare Beneficiaries Survey MCCAP. See Managed Care Consumer

Assistance Program MDI. See Metered dose inhaler technique Meaning and language, in the context of

health, 115–118 Measures used in health literacy research,

43–51 grade-level measures of literacy, 45–47 limitations of existing measures, 49–51 literacy surveys, 43–45 measures of health literacy, 47–49

Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

340 INDEX

“Media Smart Youth”, 153 Medicaid, 15, 48, 65, 135, 274, 288–290

Arizona enrollees, 100 state managed care contracts, 200–201

Medicaid Health Plan Employer Data and Information Set, 277

Medical Expenditure Panel Survey (MEPS), 14, 53, 55

Medicare, 15–16, 83, 102, 228, 274, 285, 287–288

federal spending for, 285, 288 numbers of enrollees in, 287 predicted expenditures on, 289

Medicare Beneficiaries Survey (MBS), 14, 53, 55

Medline, 68, 127, 244 MEPS. See Medical Expenditure Panel

Survey Metered dose inhaler (MDI) technique,

98–99 Metlife Foundation, 26 Mexican American Legal Defense and

Educational Fund, 293 Migrant Health Centers, 219 Mini-Mental State Examination (MMSE),

84–85 MMSE. See Mini-Mental State

Examination MOE. See Maintenance-of-Effort funds Molina Healthcare, 134 Morocco, literacy proficiency in, 83

N

NAACP. See National Association for the Advancement of Colored People

NAAL. See National Assessment of Adult Literacy

NALS. See National Adult Literacy Survey National Adult Literacy Survey (NALS),

6, 25, 44, 49–50, 52–53, 60–67, 80, 100, 102, 120, 154, 274, 288, 297

article “Swimmer completes Manhattan marathon” used in, 309

bank deposit slip used in, 320 bus schedule used in, 318 discrimination article used in, 311 document literacy and sample items,

312–319

energy chart used in, 317 excerpts from, 308–322 home equity loan advertisement used

in, 322 job application used in, 314 Korean jet article used in, 313 Level 1, 8, 10, 45, 61–65, 100, 102,

120, 123 Level 2, 8, 10, 45, 61–64, 102, 120 Level 3, 10, 45, 120 Level 4, 45, 61 Level 5, 61, 123 peanut butter label used in, 321 prose literacy and sample items, 308–

312 quantitative literacy and sample items,

319–322 sales graph used in, 316 wage and tax statement used in, 315

National Assessment of Adult Literacy (NAAL), 14, 49, 53, 55, 62

National Association for the Advancement of Colored People (NAACP), 294– 295

National Cancer Institute (NCI), 26, 121, 153, 215, 254

National Center for Education Statistics, 193, 292

National Center for Health Promotion and Disease Prevention (NCP), 197

National Center for Research Resources, 153

National Center for the Study of Adult Learning and Literacy (NCSALL), 155–156

National Committee for Quality Assurance (NCQA), 14, 16, 55, 199–201, 228, 278

National Conference of State Legislatures’ Children’s Policy Initiative, 136

National Council of La Raza, 293 National Council on the Aging, 160 National Health Education Standards:

Achieving Health Literacy (NHES), 11, 15, 143–145, 152, 161

National Health Objectives, 148 National Hispanic Medical Association,

293–294 National Immunization Program, 195 National Institute for Literacy (NIFL),

155, 251

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Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

INDEX 341

National Institute for Occupational Safety and Health, 195

National Institute of Child Health and Human Development (NICHD), 15, 147, 161, 196

National Institute of Environmental Health Sciences, 196

National Institutes of Health (NIH), 14, 16, 52, 55, 103, 119, 195–196, 229

Department of Cancer Control and Population Science, 254

grant funding over the 1997–2002 period, 196

National Library of Medicine, 4, 31, 119 National Literacy Act of 1991, 43 National Medical Association, 112n, 295 National Network of Health Career

Programs in Two Year Colleges, 159

National Research Council (NRC), 147 National Science Foundation, 15, 150–

151, 161 National Science Teachers Association,

146, 150 National Standards to Protect the Privacy

of Personal Health Information, 192

National Survey on Health Literacy Initiatives, 198

National Urban League, 295 National Youth Anti-Drug Media

Campaign, 124 Native Americans

cultural language of, 114–115 literacy proficiency among, 63

Native Hawaiians, understanding of healing, 175

NCI. See National Cancer Institute NCP. See National Center for Health

Promotion and Disease Prevention NCQA. See National Committee for

Quality Assurance NCSALL. See National Center for the

Study of Adult Learning and Literacy

News media, a popular source of health information, 123

NHES. See National Health Education Standards: Achieving Health Literacy

NICHD. See National Institute of Child Health and Human Development

NIFL. See National Institute for Literacy NIH. See National Institutes of Health No Child Left Behind legislation, 147 Nongovernmental organizations,

opportunities to improve health literacy, 134

Northwest AIDS Education and Training Center, 218

NRC. See National Research Council Numeracy, sample items from the Test of

Functional Health Literacy in Adults, 304–305

O

Office-based clinician–patient communication, effect on chronic disease outcomes, 271–272

Office of Civil Rights, 135 National Standards to Protect the

Privacy of Personal Health Information, 192

Office of Disease Prevention and Health Promotion (OPHP), 192–193

Office of Minority Health, 14, 136 Center for Linguistic and Cultural

Competence in Health Care, 114 Office of National Drug Control Policy,

National Youth Anti-Drug Media Campaign, 124

Office of the Secretary, Office of Disease Prevention and Health Promotion, 192–193

Office of Vocational and Adult Education, 15, 154–155

OPHP. See Office of Disease Prevention and Health Promotion

Opportunities to improve health literacy in health systems, 201–227

approaches to health literacy in the health system, 204–225

evidence-based approaches, 126–127 other promising approaches, 127–137 overview of current efforts, 202–204 recommendations, 228–229 summary of approaches, 226–227

Organization for Economic Co-operation and Development, 61

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Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

342 INDEX

Organizations, acting to improve America’s health literacy, 286–287

Outcomes, associations of limited health literacy with, 7, 82–100

Outreach, FDA involvement in, 194 “Outside the Clinician–Patient

Relationship—A Call to Action for Health Literacy,” 63n, 285–299

advocacy organizations, 292 employers, 290–292 insurers, 285–290

OVID web gateway, 68

P

Pacific Islanders, literacy proficiency among, 63

Pakistan, literacy proficiency in, 83, 100 Partnership for Clear Health

Communication, 160 Partnerships, for health literacy in the

health system, 224–225 Patient-centered approach, 179 Patient Navigator Program, 220 Patient perspectives, and language, 117–

118 Patient–provider communication, 173–175 Patient safety and health-care quality,

176–179 Peabody Individual Achievement Test-

Revised, 48 People’s finding and using health

information, 120–126 Percentiles, 46 Pfizer Corporation, 26, 160, 214 Pictograms for patient education,

examples of, 215 “Plain Talk,” 134 Popular sources of health information,

123–126 advertising and marketing, 123–124 family and friends, 125 the Internet, 125–126 news media, 123

Portfolio Management Application software, 254

Prescription medication instructions, in Bahasa Malaysia, mock-up of, 60

Priority Areas for National Action in Quality Improvement, 13, 26, 168– 169, 240

Prison systems, as advocacy organizations, 296

Private sector, national totals for enrollees and cost of hospitalization and physician service health plans for United States, 2000, 291

Professional associations, as advocacy organizations, 296–297

Program for Appropriate Technology in Health, 134

“Programs-That-Work,” 148 Progress, measuring, 277–278 Project Toolbox, description of, 223 ProLiteracy America, 296 Promoting Health: Intervention Strategies

from Social and Behavioral Research, 111

Prose literacy, and sample items from the National Adult Literacy Survey, 308–312

Prudential Medicare HMO, 256 PsychInfo, 127, 244 PT Tool, 223–224 Public concern, health literacy as, 25–26 Public workshops, 244–249 Published studies of community-based

interventions, examples of, 128– 133

Q

Quality Chasm Report. See Crossing the Quality Chasm: A New Health System for the 21st Century

Quantitative literacy, and sample items from the National Adult Literacy Survey, 319–322

R

Race, and literacy proficiency, 63 Rapid Estimate of Adult Literacy in

Medicine (REALM)©, 47–51, 66– 68, 70–73, 76–79, 81–89, 92–95, 98–100, 195, 219, 302–303

scores and grade equivalents for, 303 Readability, of informed consent

documents, 189 Reading comprehension, sample items

from the Test of Functional Health Literacy in Adults, 305–307

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INDEX 343

REALM. See Rapid Estimate of Adult Literacy in Medicine

Reasonable care, standard of, 184–186 Recommendations, 14–16

for development of conceptual frameworks, 137

for educational systems, 161 for extent and associations of limited

health literacy, 103 for health literacy, 55 for opportunities in health systems,

228–229 Redesigning healthcare processes, rules

for, 178 Regulatory agencies, 199–201

Joint Commission on Accreditation of Healthcare Organizations, 199

National Committee for Quality Assurance, 199–201

“Relationship Between Health Literacy and Medical Costs,” 101n, 256– 266

data description, 256–259 discussion, 263–264 results, 261–263 statistical analysis, 260–261

Robert Wood Johnson Foundation, 26, 116

Roles of the federal government, 191–198 of regulatory agencies, 199–201 of state governments, 198–199

Roosevelt, Eleanor, 1

S

S-TOFHLA. See Short Test of Functional Health Literacy in Adults

Scandinavian countries, literacy in, 61 SCASS. See State Collaborative on

Assessment and Student Standards Schillinger, Dean, 267–284 SCHIP. See State Children’s Health

Insurance Program School Health Education Profiles Study, 145 School Health Policies and Programs

Study 2000, 143 Science education, K-12, 146 Scores, for the REALM, 303 Second Workshop, hosted by the

Committee on Health Literacy, 248

Self-management educational activities, 269

Sex Matters, 121–122 selected findings about the way people

obtain and use health information, 122

SF-12. See Short Form-12 Health Survey Shaw, George Bernard, 267 “Shima Yazhi” lay health program, 132 Short Form-12 Health Survey (SF-12), 84–

85, 90–91, 259–261 Short Test of Functional Health Literacy

in Adults (S-TOFHLA), 49, 66, 68– 69, 72–73, 76–79, 81, 83–85, 88– 89, 96–99, 101, 219, 256–258, 272

Simplified Measure of Gobbledygook (SMOG), 47, 201

Simplified/more attractive written materials, to improve health literacy in the health system, 214– 215

Skill cultural, 112 needed for health, 42

Slosson Oral Reading Test-Revised, 48 SMOG. See Simplified Measure of

Gobbledygook Social factors, and health, 20–21 Social service agencies, as advocacy

organizations, 296 Society

culture and, 9–10, 108–141 health literacy framework, 5, 34 opportunities for intervention in, 9–10,

108 Sociological Abstracts, 68, 127, 244 Sources of health information, 123–126

advertising and marketing, 123–124 family and friends, 125 the Internet, 125–126 news media, 123

Speaking of Health, 20, 112, 217, 221 Standard of reasonable care, 184–186 Standard scores, 46 Stanines, 46 State Children’s Health Insurance Program

(SCHIP), 135 State Collaborative on Assessment and

Student Standards (SCASS), 152 Assessment Framework Matrix, 152 Health Education Assessment Project,

152

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Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html

344 INDEX

State Medicaid managed care contracts, 200–201

State Officials Guide to Health Literacy, The, 152, 198

Strategies and opportunities, in the adult education system, 155–157

Strategies and opportunities in K-12 and university systems, 148–154

assessment of health literacy in educational settings, 151–152

examples of current approaches, 152– 154

opportunities for health education programs, 148–149

strategies for health literacy instruction, 149–151

Substance Abuse and Mental Health Services Administration, 15, 136

Survey of Income and Program Participation, 100

Surveys representatives of the study sample,

257 respondents to survey, comments from,

227

T

TANF. See Temporary Assistance for Needy Families

Target readability, of informed consent documents, 189

Task Force on Guidelines for Community Preventative Services, 127, 267

Technology-based communication techniques

examples of ongoing approaches using, 218

and health literacy in the health system, 215–218

Temporary Assistance for Needy Families (TANF), 135

Test of Functional Health Literacy in Adults (TOFHLA), 8, 47–51, 68– 71, 74–87, 90–95, 98–99, 101

abbreviated version, 74–75 excerpts from, 304–307 numeracy, sample items, 304–305 prompts for, 304–305 reading comprehension, sample items,

305–307

See also Short Test of Functional Health Literacy in Adults

TEXT study, 150–151 Third Workshop, hosted by the

Committee on Health Literacy, 249 To Err Is Human: Building a Safer Health

System, 25, 173, 176 TOFHLA. See Test of Functional Health

Literacy in Adults Traditional culture, 110–119

cultural languages, 114–115 language, 113–114 language and meaning in the context

of health, 115–118 measures able to dissociate culture,

meaning, and health literacy, 118– 119

Tricare, 285, 290

U

Unequal Treatment, 136 University health education, 147–148 University of Colorado Medical School, 158 University of Virginia (UVA) School of

Medicine, 158–159 U.S. Census, 108 U.S. Department of Defense, 14–15, 103 U.S. Department of Education, 15, 154–

155, 161 National Center for Education

Statistics, 193 Office of Vocational and Adult

Education, 15, 154–155 U.S. Department of Health and Human

Services (HHS), 2, 14, 16, 20, 25, 55, 103, 119, 149, 181, 193, 228

National Standards for Culturally and Linguistically Appropriate Services in Health Care, 109

Office for Civil Rights, 135 Office of the Actuary, 181n Task Force on Community Preventive

Services, 267 U.S. Department of Labor, survey by, 44 U.S. Department of Veterans Affairs (VA),

197–198 National Center for Health Promotion

and Disease Prevention, 197 U.S. Pharmacopeial Convention, Inc.

(USP), 215

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INDEX 345

U.S. Surgeon General, 13, 142, 240–241 Use of health information, 120–126

complexity of materials, 122–123 popular sources of health information,

123–126 selected findings from Sex Matters,

122 sources of health information reported

in a Gallup Poll, 121 USP. See U.S. Pharmacopeial Convention,

Inc. UVA. See University of Virginia

V

VA. See U.S. Department of Veterans Affairs

Veterans Administration, 14–15, 49, 103 Vignettes, 1, 3, 9, 19, 22, 31, 40, 67, 101,

108, 115–116, 167–168, 175, 177, 190, 227, 240

Virginia Medical Society, 297 Visual medicine schedule (VMS), 223 VMS. See Visual medicine schedule

W

Wagner, Ed, 269 Web-based survey, response to, 251 Weiss, Barry D., 285–299 What to Do for Health, 134 WHO. See World Health Organization “Who’s in the Driver’s Seat? Increasing

Consumer Involvement in Health Care,” 183

Wide Range Achievement Test-Revised (WRAT-R), 47–48, 72–73, 123

Women’s Health Initiative, 43 Workforce Investment Act, 154 Workshops, hosted by the Committee on

Health Literacy, 246–249 World Bank, 83 World Health Organization (WHO), 25,

145 WRAT-R. See Wide Range Achievement

Test-Revised Written materials, simplified/more

attractive, 214–215

Y

Young Adult Literacy Survey, 44

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Copyright © National Academy of Sciences. All rights reserved.

Health Literacy: A Prescription to End Confusion http://www.nap.edu/catalog/10883.html