Research paper
Legal, Practical, and Ethical Considerations for Making Online Patient Portals Accessible for All
Largely driven by the financial
incentives of the HITECH Act’s
Meaningful Use program as
part of federal US health care
reform, access to portal Web
sites has rapidly expanded,
allowing many patients to
view their medical record in-
formation online.
Despite this expansion,
there is little attention paid
to the accessibility of portals
for more vulnerable patient
populations—especially patients
with limited health literacy or
limited English proficiency, and
individuals with disabilities.
We argue that there are
potential legal mandates for
improving portal accessibility
(e.g., the Civil Rights and the
Rehabilitation Acts), as well
as ethical considerations to
prevent the exacerbation of
existing health and health
care disparities. To address
these legal, practical, and
ethical considerations, we
present standards and broad
recommendations that could
greatly improve the reach and
impact of portal Web sites.
(Am J Public Health. 2017;
107:1608–1611. doi:10.2105/
AJPH.2017.303933)
Courtney R. Lyles, PhD, Jim Fruchterman, MS, Mara Youdelman, JD, and Dean Schillinger, MD
In the United States there iswidespread use of online pa- tient portal Web sites, which offer patients access to their electronic health record (EHR). Specifically, online patient por- tals afford access to a variety of features, including viewing recent lab test results and visit summaries, refilling medications and making appointments, and sending secure messages to one’s health care provider team. Pa- tients who access portals express very high levels of interest in1 and satisfaction with2 the function- ality of online portal Web sites. Previous evidence is mixed, but it suggests the potential for portal use to promote better health outcomes.3
Expansion of portals has been driven by the federal Meaningful Use financial incentive program, which includes several targeted metrics for patients’ use of por- tals.4 Patient portals are rapidly becoming a standard feature of care, with 69% of hospitals reporting in 2015 that patients can view, download, and trans- mit medical information online.5
Despite potential changes to the health care policy environment (including political efforts to repeal the Affordable Care Act and plans to phase out the Meaningful Use program6), the centrality of portal Web sites is likely here to stay. For example, the Medicare Access and CHIP Reauthorization Act has specific targets in its quality payment program for patient engagement efforts that could be met through portal use.7 In addition, the
consumer-focused delivery of health care in the United States ensures that health care systems will continue to compete for patients and manage health care tasks more conveniently, making portal functionality a founda- tional business model for im- proving patients’ satisfaction and convenience of care in coming years.
VULNERABLE POPULATIONS AND CURRENT PORTAL USE
A growing amount of litera- ture documents that certain pa- tient subgroups (such as racial/ ethnic minority groups and those with lower socioeconomic status) are significantly less likely to use portals8—despite strong interest in portal functionality as well as high Internet and computer use rates across demographic groups in the United States.9 Paradoxi- cally, these patient subgroups represent populations with dis- proportionately greater medical need. Although 26% of the US population has inadequate health literacy,10 12% have limited English proficiency,11 and 22%
have a disability,12 little attention has been paid to the specific barriers these vulnerable patients face in accessing portal Web sites.
From the handful of research studies that have investigated usability of portal Web sites with diverse patient populations, more vulnerable patients indeed face significant technological barriers to using existing portal in- terfaces.13,14 Some of the main drivers of these accessibility challenges are portals that feature small-font, English-only, text- based content that is written at a very high literacy level. In ad- dition, existing portals often employ user interfaces that are complex to navigate and difficult to customize. Although a few EHR vendors have begun to offer the basic navigational ele- ments of portal Web sites in Spanish15 (and, in fewer cases, Chinese16), there is no published information available about how many health care systems have opted to activate such language features. Furthermore, to our knowledge, no EHR vendor has promoted disability-accessible versions of the portal (e.g., to allow customization for those with impaired vision or mobility
ABOUT THE AUTHORS Courtney R. Lyles and Dean Schillinger are with the Center for Vulnerable Populations and the Division of General Internal Medicine, Zuckerberg San Francisco General Hospital, University of California, San Francisco. Jim Fruchterman is with Benetech, Palo Alto, CA. Mara Youdelman is with the National Health Law Program, Washington, DC.
Correspondence should be sent to Courtney R. Lyles, PhD, University of California, San Francisco, Division of General Internal Medicine, Zuckerberg San Francisco General Hospital, Center for Vulnerable Populations, 1001 Potrero Ave, Bldg 10, W13, Box 1364, San Francisco, CA 94110 (e-mail: courtney.lyles@ucsf.edu). Reprints can be ordered at http://www.ajph.org by clicking the “Reprints” link.
This article was accepted May 25, 2017. doi: 10.2105/AJPH.2017.303933
1608 Commentary Peer Reviewed Lyles et al. AJPH October 2017, Vol 107, No. 10
AJPH LAW & ETHICS
challenges with typing or using a mouse), widely disseminated tools to translate actual EHR content into non-English text (beyond the basic navigational elements of the site), or enhanced portal content with simplified text or audio formats. These fundamental accessibility gaps raise legal, ethical, and clinical concerns, and ultimately jeopar- dize the return on public in- vestment in EHRs.
KEY LEGISLATION RELATED TO PORTAL ACCESS
There is no specific language in the federal Meaningful Use program that directly mentions requirements for linguistic ad- aptation or specific accessibility standards of EHRs and portal Web sites, despite the role of the Office of the National Co- ordinator for Health Information Technology (ONC) in officially “certifying” EHR products that meet basic criteria. This certification process outlines necessary features and data out- put requirements for EHR products, but it does not include usability or accessibility standards. Only a few federal agencies such as the ONC, as well as the Department of Commerce, have put forth optional guidelines or recommendations for health care systems and vendors to consider addressing accessibility independently.17,18
Although there is no estab- lished regulatory or legal pre- cedent on enforcing the accessibility of portals to our knowledge, there are other topics such as medical interpretation and multilingual translation of patient materials that highlight similar challenges related to ac- cessibility in the health care space.
Many states, such as California and Massachusetts, have followed a federal legislative pathway to enact additional laws to mandate in-personmedical interpretation.19
However, even with this addi- tionallegalprecedent,thereremain substantial challenges to the stan- dard implementation of in- terpretation services in real-world practice.20
Despite this complex land- scape, it is important to call at- tention to several key federal legislative and regulatory issues relevant to portal accessibility. These current laws could be interpreted to motivate more immediate action to improve portal accessibility. First, Title VI of the Civil Rights Act of 1964 (42 USC §2000d et seq. [1964]) prohibits recipients of federal fi- nancial assistance—including health care providers such as hospitals and clinics—from dis- criminating on the basis of race, color, or national origin. This includes individuals who speak a language other than English, who must have “meaningful access” to federally funded programs. EHRs and linked portal Web sites (funded in large part by the federal government) could therefore be evaluated on their ability to ensure access for non-English-speaking or limited-English-speaking individuals.
Second, Section 504 of the Rehabilitation Act (29 USC §794 [1973]) similarly prohibits federal discrimination by federal fund recipients on the basis of disability. Section 508 also re- quires federal agencies (and businesses supplying goods and services to the federal govern- ment) to provide electronic and information technology that is fully accessible for individuals with disabilities. Thus, there is potential to hold portal Web sites to national standards for
disability access, such as text enlargement and visual display modification (e.g., by font size or contrast).
Third, Section 1557 of the Affordable Care Act (42 USC 18116 [2010]) reiterates the nondiscrimination requirements of both of the previous laws. In addition, this section extends nondiscrimination requirements not only to federal fund recipients but to all federally conducted programs and activities. Under Section 1557, for example, Medicare—as a federally con- ducted program—cannot dis- criminate on the basis of race, color, national origin, or dis- ability (as well as sex and age). In addition, insofar as race, color, and national origin are associated with health literacy skills, there also are legal arguments that can be made related to the disparate impacts21 that inaccessible patient portals have on the health and health care access of vulnerable populations.
However, it is important to note that federal laws could re- ceive even less attention (or even face potential repeal) in the cur- rent political and legal landscape to decrease government regula- tion overall.
DIGITAL ACCESSIBILITY GUIDANCE
In addition, there are multiple business standards for accessibility that often significantly exceed compliance obligations. Accessi- bility principles heavily overlap with human factors design prin- ciples. Using these principles, all individuals (even those without communication barriers) typi- cally have higher (and likely more effective) use of an accessibly designed and easy-to-use Web site,22 getting the information
they need and completing tasks more effectively.
The field of accessibility has followed other digital design practices and has become in- tegrated into mainstream tech- nical standards. The World Wide Web Consortium has created different Web accessibility stan- dards that apply to Web content, Web browsers, and authoring tools. These Web Content Ac- cessibility Guidelines (WCAG, now in version 2)23 are aligned with other Web content stan- dards, such as HTML5, to make improving accessibility an easy part of Web content design.
The WCAG standards have 4 primary design principles:
d The content on a Web site has to be perceivable to the full range of users (e.g., easily transformed into speech, braille, or be enlarged on a page).
d Users should be able to navi- gate and operate the Web site (e.g., cannot require specific interactions that a user cannot perform).
d Users have to be able to un- derstand the Web site content and how to operate it (e.g., without acronyms or complex terminology).
d The Web site has to be op- erable on a robust and wide range of browsers and devices, including assistive technolo- gies. This is particularly im- portant because certain subgroups in the United States are more likely to own specific types of devices, such as solely using their mobile phone for Internet access.24
The WCAG 2.0 standards contain three levels of increasing accessibility, known as “A” (the most basic), “AA,” and “AAA.” Increasingly, WCAG 2.0 AA-level accessibility has
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become the de facto minimum level of support required by many accessibility policies. When organizations have been sued over the inaccessibility of their Web sites, some settle- ments have mandated WCAG AA compliance.25
If vendors and content de- velopers know that Web acces- sibility is a requirement (as it increasingly is with government requirements and litigation risk), it can be a relatively inexpensive part of the development process rather than an expensive burden of compliance after implementa- tion. Moreover, if vendors take on these issues proactively rather than waiting for regulatory man- dates, these improvements in ac- cessibility have the potential to increase the attractiveness of their product for more diverse target markets. Many features that star- ted out as primarily accessibility features (screen enlargement, synthetic voice output, voice recognition, word prediction) have now become standard ca- pabilities of modern user in- terfaces, in part because they make those interfaces much more ef- fective for everybody, not just people with disabilities.
In fact, there are many efforts to enhance existing portal func- tionality, such as improving the simplicity or automatic trans- lation of the health information presented26; however, these strategies have not been quickly or widely disseminated, espe- cially if they were originally de- veloped in an academic rather than business environment. Similarly, there are many health care content tools that provide guidance for improving the presentation of medical content, such as the Patient Education Materials Assessment Tool de- veloped for the Agency for Healthcare Research and Qual- ity.27 These existing resources
could be combined with stan- dards like WCAG to promote both functionality and readability accessibility.
ROLE OF HEALTH LEADERS FOR AFFECTING CHANGE
Finally, from the public health and health care perspective, there is an ethical imperative to work on these issues to reduce the potential for the emergence or amplification of health disparities with respect to portal use. From a clinical appropriateness and effectiveness perspective, argu- ably the most vulnerable pop- ulations have the most to gain from meaningfully interacting with their medical record data, through potential improvements in convenience, communication, and self-management.
Although we have outlined the ways in which federal regu- lators and vendors themselves might take on issues related to accessibility, we feel that real change will necessitate in- volvement from public health and clinical leadership, including health care administrators, health plans and insurers, clinical champions, advocates, and re- searchers. To ensure that health care organizations can use their collective voice to become leaders in this space—to promote change within their own orga- nizations in parallel to advocating for action at both the regulatory and business–vendor levels—we propose the following recommendations:
1. Health systems should insist on user-friendly design for all products purchased or de- veloped. Because of the lim- ited number of EHR options available, each health care
system may not feel that it can base its purchasing decisions on the usefulness of the product for its patient pop- ulation (or even the capacity to make changes to the existing product). However, the collective purchasing power of many health care systems demanding accessi- bility could make an impact on this issue given the rela- tively small number of EHR vendors in this space.
2. Following standard practices for other printed educational materials, health care leaders should advocate for avail- ability of portal content in the languages commonly spoken by the system’s target pop- ulation (often defined as 5% of the population, or 1000 or more patients served28). Word-for-word or auto- mated translations are often inadequate, as materials need to be adapted for cultural and linguistic differences to retain meaning.
3. Systems should plan for in-person and online training programs that can enhance skills, patient activation, and ultimately rates of portal use among those with commu- nication barriers, even through partnerships with li- braries and other community- based organizations with experience in digital literacy promotion. Online educa- tional and self-management support materials should be considered a supplement to, not a substitute for, in-person education.
4. Health care systems should promote more active out- reach and engagement in portal use from family mem- bers and other caregivers and proxies,29 who are critical for health care access for a growing proportion of the
US population. This would include formalizing pro- cedures to enable family en- gagement in portal use.
5. Health systems as well as ac- ademic institutions should support additional basic re- search and implementation of existing technologies to overcome communication barriers, such as integrating digital tools to help with comprehension of complex medical terminology.
Because digital access to medical information is becoming a core domain of medicine, the public health and medical com- munities should be spearheading efforts to address this digital di- vide. Although health care sys- tems continue to offer alternate ways of communication (e.g., phone, in-person) to access pieces of the EHR, digital communication is rapidly evolving as a primary means of care. The future centrality of digital health, combined with the legal and ethical frameworks on which health care is constructed, create an imperative for imple- menting portal accessibility strategies now.
CONTRIBUTORS All of the authors contributed to the conceptualization, analysis, drafting, re- vision, and approval of the article.
ACKNOWLEDGMENTS This study was funded by the Agency for Healthcare Research and Quality (R00HS022408, to C. R. L.) and the National Institutes of Health (R01 NLM012355-01A1, to C. R. L. and D. S.; G08 NLM012166, to C. R. L.; and 2P30 NIDDK092924-06, to D. S.).
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