Nursing ARTICLE ASSIGNMENT

The Health Care Manager Volume 35, Number 4, pp. 312–320 Copyright # 2016 Wolters Kluwer Health, Inc. All rights reserved.

Consumer Health Informatics Promoting Patient Self-care Management of Illnesses and Health

Minsoo Jung, PhD, MPH

Consumer health informatics (CHI) is propelling important changes for medical providers and the lives of patients through information and communications technology. Independently, medical consumers seek, collect, and use health information for decision making. However, when constructing a CHI-based medical platform, high technology must be applied in a fully under- standable and usable format for both health care providers and consumers. This study examines the present status of CHI and its effect on medical consumers. For the development of CHI, we discuss the need for tailored health communications and capacity building with chronic patients at the medical center. First, empowerment is a key characteristic needed for medical consumer health care management. However, promoting patient self-care management of illnesses and health is necessary to create conjugation where cooperation with medical service providers is possible. Also, establishing a health care delivery system that will support cooperation is nec- essary. Second, tailored health communications can uniquely construct the health information of patients, which prevents unnecessary or excessive information from leading patients to confused and inappropriate decisions. Ultimately, through the present environment of health communi- cation, the innovation of a consumer health care information system has become the tide of the times and the positive effect of improved health can be expected. Key words: consumer health

information, health communication, health promotion, public health informatics

CONSUMER HEALTH INFORMATICS (CHI)

is an academic discipline that analyzes

medical consumers’ information needs and

raises their accessibility to information and

thus integrates these qualities in a health

care information system.1-3 Presently, medical

consumers’ active search for health information

on the Internet has been advanced in the form of information and communications technolo-

gies (ICTs). The concept that one must take

care of one’s own health has also spread

through consumerism.4 These 2 key points

have brought about the innovation and greater

Author Affiliation: Department of Health Science,

Dongduk Women’s University, Seoul, South Korea.

This study was supported by a Dongduk Women’s

University grant (2015-03769).

The author reports no conflicts of interest.

Correspondence: Minsoo Jung, PhD, MPH, Department of

Science Health, Dongduk Women’s University, Ye-Ji

Building, Room 403, 23-1 Wolgok-dong, Seongbuk,

Seoul, South Korea 136-714 ([email protected]).

DOI: 10.1097/HCM.0000000000000130

efficiency of the health care delivery system,

which progresses improvements of medical

service quality. In addition, ICTs are changing

the medical system, reacting with the CHI

even more swiftly through the rise of the so-

called predictive, personalized, preventive,

and participatory (P4) medicine.5 Specifically,

the focus of the medical environment has shifted from medical providers to nonchronic

patients and chronic patients such as cancer

survivors with the emergence of professional

consumers or health information seekers who

actively seek health information and health

care management through the Internet and

social media.1 These patients have benefited

much from such an environment. Consequently, communication methods between medical

providers and consumers have changed in a

revolutionary manner.6,7

However, such revolutionary changes do

not always yield positive results. The most

widely cited issue is communication inequal-

ities based on the digital divide.8 For example,

the unequal use of medical resources with

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.

312

Consumer Health Informatics 313

regard to the inverse care law is defined as

the degree to which quality medical services

are used by patients and has an inverse cor-

relation with the medical service needs of the

group in question.9 Likewise, when the in-

verse care law is applied to communication inequalities that have developed in the in-

formation age, the result is that accessibility

to appropriate information forms an inverse

correlation with the need for appropriate in-

formation. Indeed, the information society al-

lows unlimited access to medical information

and incites the misuse and abuse of medica-

tion due to unverified and inaccurate medical knowledge.10,11 For example, there are often

heard cases where cancer patients miss the

appropriate timing for treatment after relying

solely on misdiagnosed health information

or misprescribed medication. Ultimately, in a

situation lacking appropriate management and

control in the quality of medical information,

medical information for medical consumers currently available on the Internet is likely to

fail in providing scientific grounds or incites

the public to engage in acts of fallacious med-

ical consumption. This raises an important

question. How should we approach this prob-

lem? Some experts point out that if the public

widely uses personal health records (PHR),

medical consumers may engage in ‘‘online doctoring’’ in a manner similar to ‘‘online

banking.’’12

Computers and the Internet have strength-

ened ‘‘patient power’’ through the accessibility

of information. In a self-directed way, patients

now participate in medical decision making

with regard to their health problems.13,14 As

an example, the paternalistic communication model is focused on prescriptions and com-

pliance, which once existed between medi-

cal providers and patients.10,15,16 Presently,

patients are encouraged to participate in de-

cision making to improve the quality of medical

examinations and treatments that are provided

to them. However, this does not mean that

the authority of physicians has weakened. On the contrary, it has become more possible

to enhance patients’ medical compliance and

communication skills through computers and

the Internet.17 For example, if patients use

computer to manage their allergies, there can

be positive additional health effects in the

process of reading medical records.13,17 The

most important attribute is that patients take

interest in their own illnesses and form the

will to take care of themselves.15,17 Likewise, the use of computers has rarely led to side

effects such as depersonalization. On the con-

trary, the use of computers has been useful for

resolving patients’ medical or psychological

problems.18 For example, patients can aid phy-

sicians, listen to explanations on uncertain health

information, and engage in more communica-

tion than before with regard to sensitive in- formation.19,20 Through Web sites, patients

can also request and confirm their prescrip-

tion medication and view their medical ex-

aminations results.21-23 Ultimately, CHI has

emerged with a vision where patients at their

homes can view their own medical history

through the electronic medical record system

and communicate with physicians.15

CUTTING EDGE ISSUES OF CHI

A massive amount of information has been

created by the development of computers

and the emergence of the Internet, which

has allowed health-related information access

to medical consumers. Previously, health-related information access had been monopolized by

health care providers through the World Wide

Web, which served as the decisive cause be-

hind the emergence of CHI in the 2000s.24,25

Presently, CHI is an indispensable tool that

promotes and aids consumers, through the

use of telecommunication. Consumer health

informatics collects information, analyzes spe- cific medical needs, and prescribes health-related

decisions.2 In such a situation, there is a phe-

nomenon where medical consumers are divided

into seekers, who actively seek, promptly acquire,

and use health information, and nonseekers,

who do not take advantage of this opportu-

nity.26,27 When medical consumers have health

problems, they tend to search the Internet for illnesses that coincide with their symptoms,

communicate actively with physicians, and make 28,29 decisions regarding optimal treatments.

When compared with a marathon, patients

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.

314 THE HEALTH CARE MANAGER/OCTOBER-DECEMBER 2016

with cancer, diabetes mellitus, or hyperten-

sion play the role of the marathoner, whereas

health care providers play the role of the coach.

Medical consumers who are called ‘‘e-patients’’

share several characteristics. Through the In-

ternet, e-patients promptly learn about their newly diagnosed illnesses and symptoms.29

In advance, e-patients prepare for consulta-

tions with physicians and look up the efficacy

and side effects of medical supplies prescribed

by physicians. Medical consumers also use

social media to obtain health information

and diverse kinds of social support from

those around them.26 For example, parents may seek relevant information from the mass

media and people around them to determine

whether to allow their children to be vacci-

nated when there is rampant type A subtype

H1N1 influenza.30 Social support through

social networks is especially noticeable among

e-patients with chronic diseases. Through pa-

tient community Web sites, e-patients meet and share information with other patients

that suffer the same illnesses.29 E-patients also

discuss currently available treatments, recom-

mend experts in relevant fields, and discuss side

effects and countermeasures. In the process,

e-patients seek and study the relevant litera-

ture to respond actively to their illnesses and

thus form a will to overcome their illnesses and gradually develop equal relationships with

physicians.29 The existing medical knowledge

and guidelines are newly constructed and

reinterpreted from the perspective of patients,

who personally experience and suffer from

illnesses. When a medical guidance system led

by the patient community develops to a cer-

tain level, health care providers and physicians can participate and listen to patients reflect on

their difficulties in medical decision making.31

If physicians and patients jointly make deci-

sions regarding treatment, better health results

may be achieved.

However, computers and the Internet are

not sufficient conditions for the rise of med-

ical consumers. Within hospitals, electronic health records must be standardized for the

generation of exchangeable health informa-

tion. Although this system requires much ini-

tial costs, electronic health records can serve

as a foundation for transition to PHR, which

may create the delivering and sharing of di-

verse clinical results, patient-tailored health

information, and the implementation of e-health

education.32 As is often observed in clinical

practices, patients notified of their diagnosis may become despondent or deeply distressed

and thus lose motivation or give up on the

struggle against their illnesses. Certainly, the

process to turn such patients into health

information seekers is not easy. Neverthe-

less, by opening up accessibility to health

information, the present ICT environment

strengthens patients’ capacity and helps them to have a sense of challenge against their ill-

nesses. Ultimately, CHI is designed as a com-

prehensive health care system that supports

medical consumers’ information acquisition

and aids their understanding of individual

health problems.33

FUTURE TASKS

Building the capacity of the medical consumer

Consumerism is a social movement that

arose in the 1960s and is characterized by the

guarantee of consumers’ right to medical deci-

sion making based on access to information.

The concept of medical consumers began 20 to 30 years later. The most important thing in

constructing a CHI-based medical environ-

ment is that high technology must be user-

friendly by patients and medical consumers. 34

In the case of developed nations, the major

causes of death have shifted from acute dis-

eases to chronic diseases such that it has be-

come important for people to engage in their health behavior and to change their lifestyles

on their own. Consequently, strengthening

medical consumers’ capacity to adapt to the

changed medical environment has emerged as

a task facing CHI.35,36 When patients person-

ally participate in the establishment of medi-

cal examination and treatment plans, better

prognoses can be expected in comparison with existing treatment methods, where pa-

tients only played passive roles under a pa-

ternalistic ideology. In this study, ‘‘patients’’

are defined as members of the public who

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.

Consumer Health Informatics 315

have formed partnerships with specific medical

experts.37 The relationship between medical

consumers and physicians is characterized by

mutually shared goals, participation in the

establishment of plans, and accountability for

the implementation of medical examination and treatment plans.38 Medical consumers

are needed also at the health care system

level because more weight must be placed on

prevention and health promotion rather than

the treatment when reimbursement programs

are changed into prospective payments. As a

result, considerably increasing national medi-

cal expenses can be controlled. Furthermore, when medical consumers’ capacity is strength-

ened, their empowerments can contribute

to the mitigation of the problem of health

inequality.8,39

Health and disease are important issues that

determine individuals’ quality of life and are

very serious in the case of individuals with rare

and incurable diseases. Because inequality in the social structure cannot be resolved, ICTs

have been discussed as an important means of

mitigating health inequality and reducing the

disparities in life expectancy.8 However, even

though the Internet is the universal method

for obtaining information,40 there exist so-

cioeconomic disparities in the degree of and

capacity for the use of health information.41

In general, such disparities are confirmed by

the empirical evidence that groups with poor

health are low in the accessibility and use of

information.42 Therefore, scholars have con-

ceptualized this phenomenon as communica-

tion inequality.26,43 Communication inequality

implies that health care informatics, which

exists in an ICT environment, can be a new crisis yet an opportunity for patients and citi-

zens. To transform the crisis into an opportu-

nity, the rise of individuals or medical consumers

with the capacity for CHI to communicate is

necessary.

The key to CHI lies in empowerment, which

is a technique for promoting consumers’ par-

ticipation in their own health and health care management. Empowerment is a social pro-

cess where individuals exercise control over

their lives, obtain what they need, resolve prob-

lems, and mobilize, promote, and strengthen

44,45 required social resources. Such capacity

is created when power is redistributed in a

given situation or group. Physician-patient

communications and knowledge sharing in

terms of health care information are exam-

ples of empowerment. The elements that define empowerment include information,

accessibility, right of choice, and claim rights.46

Authorized individuals can access relevant

information resources, intervene in their use,

and form solidarity with other individuals to

create collective empowerment in the public

health sphere. Medical consumer organizations

can also participate with government organi- zations or medical business in health care

management projects and determine the pri-

ority in management and wield influence over

the population’s health promotion problems.

Consequently, empowerment is the gathering

of power so that individuals or organizations

can act in an optimal manner to achieve shared

goals that is armed with knowledge and confi- dence. Empowerment is indispensable to self-

care management with regard to disease and

health and can be maximized through cooper-

ation from medical service providers and posi-

tive responses from the health care delivery 33,47system.

Medical consumers receive assistance in di-

verse ways in performing health care manage- ment or participating in medical services in

a CHI environment. In addition, medical con-

sumers seek advice in accessing and interpreting

their own medical records and making related

medical decisions.48,49 Interactive health com-

munication technologies manage CHI-related

Internet resources and professional medical

services.50,51 Empowered medical consumers gradually come together in the process of

forming relationships through the Internet

and social media where they can discuss health-

related issues.52 Organized medical consumers

claim that they must express their voices so that

health information tailored to their needs is gen-

erated, which enhances the quality and reli-

ability of such information.53-55 Undergoing such a process repeatedly, CHIs have improved.

Indeed, numerous projects have empirically

confirmed the effect of CHI. For example, the

Comprehensive Health Enhancement Support

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.

316 THE HEALTH CARE MANAGER/OCTOBER-DECEMBER 2016

System has supported decision making related

to treatment. The system provides necessary in-

formation to patients with complicated health

problems and effectively provides social sup-

port.39 For a second example, the Baby CareLink

Project system allows parents to observe and manage their babies in neonatal intensive

care units together with medical service pro-

viders.23,56 In recent years, health care infor-

matics systems have been introduced into

local communities and have been used to

promote capacity to access information and

resolve community health problems.57,58

Ultimately, CHI facilitates information ac- cess to patients and grants individuals author-

ity over health care management.59 In the

past, the provision of medical records to pa-

tients was believed to lead to medical acci-

dents. Thus, patients were treated as objects

of the treatment. However, reports have con-

tinued to show that the sharing of medical re-

cords with patients enhances the effectiveness of the treatment.60 For example, when patients

with diabetes mellitus were programmed to

manage their own diet, blood sugar levels,

degree of exercise, and medical records, their

medical compliance and prognoses improved.61

Consumer health informatics does not merely

stop at enhancing patients’ information accessi-

bility. On the contrary, CHI encourages patients to use information, which strengthens their ca-

pacity to participate in treatment. Allowing pa-

tients to make medical decisions with medical

service providers divides the responsibility for

treatment between the 2 parties. This creates

the motivation and inceptive for patients to

actively cooperate with the treatment.

Tailored health communication

Because of technological development, re-

cent years have seen the emergence of tailored

health communication, which obtains individ-

uals’ information, poses questions in forms

appropriate to what has already been recorded,

and provides auditory and audiovisual feedback

in a way appropriate to the obtained informa- tion. The tailored approach refers to informa-

tion or transformational strategy designed for

an individual based on his or her unique charac-

teristics and its results.62,63 Such an approach

is unique in that public health pursues health

promotion and disease prevention for many,

with populations or communities as the ob-

jects. However, to change an individual’s health

behavior, a goal-oriented method that applies

the principle of market segmentation may be more useful than a population-based ap-

proach.64,65 As explained by the elaboration

likelihood model, attitude formation and change

can occur through the cognitive decisions of

core pathways, which are formed after prolonged

thought and based on more experience than

are peripheral pathways.66-68 Consequently,

CHI provides patient-tailored information and encourages correct interpretation of decisions

regarding health information by not providing

unnecessarily excessive information to patients.

Thus, patient-tailored information raises the

possibility of leading patients to appropriate

and desirable behavioral change.63,69,70

The tailored communication system has

been used broadly to provide information to chronic and posttreatment cancer patients

who require intensive care and has been ac-

knowledged for its effects as an intervention

measure for desirable behavioral change. For

example, the system has been effective for

smoking cessation, exercise, diet improve-

ment, preventive screening, and weight man- 71-74agement. Going one step further, projects

to strengthen patients’ decision-making capac-

ity have been implemented recently and have

provided tailored health information on

specific diseases.63,75 Such projects have been

combined with behavioral science theories in

the field of health education in multifaceted

ways to increase their use and prompted the

rise of bioinformatics.76,77 An integrative model of behavior prediction, Fishbein’s guidance

prompts medical consumers who view their

medical records and use the tailored commu-

nication system to hold desirable health beliefs

and attitudes, and encourages related behav-

ior.78 However, as users’ interest increases, the

technology and software to realize these in-

terests must be provided. For example, a tai- lored system created by using natural language

generation frequently uses persuasive argu-

mentation that will achieve the goal of pro-

moting behavioral change through the use

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.

Consumer Health Informatics 317

of argumentation theory.79 Natural language

generation users are accepting the fact that

information having the same meaning can

be transmitted through structures with di-

verse sentences, paragraphs, and phrases.

Structures with multiple discussions are nec- essary to promote communication in complex

spheres such as health behavior change. Thus,

more efforts must be made to understand the

official rules and indication methods in which

the structures in tailored health messages

are used.

CONCLUSIONS

The number of patients with chronic dis-

eases, cancer survivors, and national health

care expenditures invested with these kinds

of patients are gradually increasing. However,

the quality of life and life satisfaction for these

patients are relatively low.80 The changes in

ICT-based health care have contributed to the rapid development of the consumer health in-

formatics field currently known as CHI, e-health, 12,81 and computer-based information systems.

Especially, computer-based information sys-

tems turn existing fragmented data into ac-

cumulated information, which keeps producing

new knowledge. On the basis of these changes,

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