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Designing PHRs with Accessibility in Mind

January 22, 2015
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‘Accessible Designs for Personal Health Records’ prototype is based on disabled users’ needs

Besides blogging for Healthcare Informatics, I also write for a publication called Campus Technology, which is written for CIOs in higher education. I am currently working on a story about the challenges of launching an institution-wide technology accessibility initiative at Temple University in Philadelphia, and I have written on this topic in higher education before. But to be honest, I hadn’t thought as much about how it might apply in healthcare until I saw a great presentation Jan. 22 by Dean Karavite, the lead human computer interaction specialist in the Department of Biomedical and Health Informatics at the Children’s Hospital of Philadelphia.

Karavite described a three-year, grant-funded project CHOP has partnered on with the WGBH National Center for Accessible Media in Boston and Inglis House, a Philadelphia nonprofit organization that manages the care of people with severe disabilities. They set out to investigate how the benefits of medical information technologies could be expanded to fully include people with sensory and mobility disabilities. Despite the significant investments being made to accelerate the adoption of EHRs and personal health records (PHRs), the researchers found that people with disabilities are generally excluded from using these systems due to infrastructure limitations, inaccessible interface designs, and inaccessible content. The Accessible Designs for Personal Health Records project worked with a cohort of disabled people to identify their health IT needs and the current state of PHR accessibility and then designed a prototype based on the principles of both accessibility and usability.

Karavite said the project, funded by the National Institute on Disability and Rehabilitation Research in the Department of Education, is intended to influence public policy and inform the health IT industry about the disparities people with disabilities are experiencing as PHR adoption rises.

Because they are high-volume consumers of health care, people with disabilities would benefit greatly from a usable and accessible PHR, he said. Based on surveys and interviews, the project leaders developed a set of 22 requirements representing health information tasks for PHRs. Examples include:

• The PHR will be organized in way that guides consumers to the most important information in their medical record including diagnosis, medications and results.

The PHR will allow consumers to identify and edit or annotate information in their medical record that is out of date or incorrect. (Multiple participants commented on encountering incorrect and/or out-of-date information in their medical record. They felt it was important to be able to indicate or flag this type of information, if not directly correct it themselves.)

• The PHR will allow consumers to easily transfer information to and from other practices, providers or hospitals. (People with disabilities often see multiple care providers including primary care providers, clinical specialists and other healthcare professionals including physical, occupational and/or speech therapists as well as home health nurses and aides. Participants described this as a critical and frequent scenario in their care, indicating a need for interoperability and common standards.)

Karavite said the project team sought to do usability testing by observing study members using current PHRs on the market, but could not get any PHR vendors to participate, even though the involvement would be anonymous. Instead they performed a less formal review of three PHR systems: a hospital PHR integrated with its EMR; an ambulatory PHR integrated with a practice EMR; and a web-based consumer PHR not directly integrated with any EMR.

The project’s online report notes interesting contrasts from this assessment. “The hospital PHR was the least functional and least usable, yet was the most accessible. Meanwhile the ambulatory PHR was the most functional and most usable, yet failed to meet basic accessibility standards. The consumer PHR was quite usable despite failing to meet accessibility criteria, and failed one crucial accessibility requirement: the entry of dates by people with visual and/or physical disabilities, a critical action required by almost every task managed by the system.”

Using the requirement list developed by users and the noted limitations of current PHRs, the project team created a prototype PHR design that used both human-computer interface best practices and Web and software accessibility standards. “One challenge we had was how to create low-fidelity mockups for people who are blind when all the common prototyping tools lack accessible code,” Karavite said.

“Many PHR designs look like corporate dashboards,” he said. “Our subjects rejected that look. They said that is not for me.” He said they wanted a simply formatted look at the complete medical record prioritized by the things they need to access most often.

The prototype they came up with offers access to a medication list that includes both current and past medications plus the ability for the patient to edit/add/reconcile medications, including the addition of supplements. Any patient-reported changes trigger a notification and review by the practice.

Other features included greater access to educational material and care plan information, as well as medical supplies and insurance information.

Now the project is moving into the outreach stage. “We want to share ideas with people who develop and design these systems,” Karavite said. “We feel this approach to universal design can lead to a more functional PHR for everyone.”

More information on the project can be found at: