A Case for Accessible Personal Health Records

There is a divide between the people building technology tools for patients and the patients that may use them. Too often tools are built in the same way one might build a social media app or a news web site.

However, a great many users have a greater need for accessibility from these tools.

University of Washington researchers conducted a review of consumer-facing digital health tools on the market in 2014 and found that none of them were accessible.

Because people who are blind or have low vision are more likely to have health problems such as obesity or diabetes, it’s especially important that mobile health (mHealth) applications — health tracking sensors that connect with smartphone apps — work for those users.

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In fact, when app developers simply “borrowed” standard iPhone operating system elements, the products were more accessible, the researchers found. When they designed custom elements, they rarely included the necessary information to make them work with screen readers that assist low-vision users.

The Atlantic explored why we’re not getting good health tools from Silicon Valley, though the argument can be extended across nearly the entire software industry:

The South has the highest obesity prevalence, followed by the Midwest, Northeast, and the West. Among predominant American races, Blacks have the highest rate of obesity, followed by Mexican Americans, other Hispanics, and finally Whites. It seems as though, if innovators are looking to build healthcare solutions, the target demographic is not the technophiles early-adopters of The Social Network, who are predominantly middle- to upper-middle class whites and Asians living on the coasts.

User Experience Professionals Association carried an article that explored the process to get personal health records, and the tools that utilize them, to truly be useful to users. In interviews with participants, there was a common theme:

Many participants manage multiple complex health issues, both related and unrelated to their disability, compounded by challenges in mobility, communication, income, and access. It is important to realize that a disability is not an illness. Many participants felt they were in good health and did not consider their disability a health issue. However, nearly all participants expressed dissatisfaction with healthcare system access and health information resources.

The story went on to describe the process behind building a prototype personal health record (PHR) tool, partly by leaning on interviews, reviews of existing PHRs/portals, and usability testing. The examples, however, addressed only three of more than twenty use cases. You can read more in the article Useful Personal Health Records: Designing for Accessibility and Innovation.

I had the pleasure of seeing this prototype PHR tool at the CSUN Annual International Technology and Persons with Disabilities Conference earlier this year. The prototype was presented by two members of the team from WGBH National Center for Accessible Media. Others who made up the team came from The Children’s Hospital of Philadelphia, Center for Biomedical Informatics, Inglis Foundation, and Usable Development.

You can explore the PHR prototype on your own and gain some insight into the goals and outcomes of building this tool by reading the research reports.

As one of the few in the room who looked at this tool through the perspective of a software developer (as opposed to a clinician), it was great to see so much good work but I also recognize the need for further accessibility improvements.

I am very much looking forward to seeing any new developments at this year’s CSUN conference, though I understand the funding for the project had run out already.

More importantly, I am hoping those who are building patient-facing health tools can dive into the existing research from this prototype PHR project and pair it with the context I’ve tried to lay out at the start of this piece.

After all, if we are building tools that work for those among the most under-served and at-risk population in health care, then perhaps it will help elevate everyone’s experience, improving overall satisfaction and cutting our costs.