Accessible Designs for Personal Health Records

Significant federal investment is accelerating adoption of electronic health record systems (EHRs) and personal health records (PHRs) by hospitals, clinics, and medical practices. Providers and insurers are offering patient portals and using social media to support health care management and provide behavioral support through PHR systems. Development and deployment of these emerging systems and services is occurring in advance of any health IT accessibility specifications or policy requirements. People with disabilities are generally excluded from using these systems, due to infrastructure limitations, inaccessible interface designs and inaccessible content. They are also among those populations most likely to require or benefit from personalized online interactions with health care information.

The WGBH National Center for Accessible Media (NCAM), the Department of Biomedical and Health Informatics (DBHI) at the Children's Hospital of Philadelphia , and Inglis have integrated accessibility requirements with usability factors in the development and evaluation of prototypes to make personal health records and technology-based patient information accessible to people with disabilities. The project design reflects rigorous Human-Computer Interaction (HCI) product-development techniques applied to state-of-the-art PHR technologies. The project prototype was developed and iteratively tested by diverse users and stakeholders, and are now available for all to learn from. Project activities and deliverables include:

• Development of field-derived user requirements including a gap analysis of accessibility and usability barriers within technology-based personal health records and patient education information products or services, offered across the continuum of in-patient, out-patient and home-care services provided by hospitals, clinics, skilled-nursing and independent-living facilities.

• Prototype development informed by user requirements and complex use cases which meet both usability and accessibility criteria for providing equal and meaningful access to the range of medical and healthcare information offered via PHRs. Prototypes model accessible solutions (content assessment, content creation and interactions, navigable interfaces and applications, and an accessibility metadata schema) and were iteratively evaluated by people with disabilities and care providers.

• Participation in national health IT usability and standard initiatives to promote review of use cases and prototypes and support inclusion of accessibility requirements in EHR and PHR requirements and certification processes. Prototypes also model how metadata elements, drawn from the IMS/ISO Access for All standard, can enable personalized search and display of accessible content if implemented within EHRs and PHRs and other patient information resources.

The research results, user requirements, and prototype are all available on the project's website. Please visit the Accessible Designs for Personal Health Records website to see all the results.