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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 Center for Biomedical Informatics (CBMI) at Children’s Hospital of Philadelphia, and the Inglis Foundation propose to integrate accessibility requirements with usability factors in development and evaluation of prototypes to make personal health records and technology-based patient information accessible to people who have disabilities. The project design reflects rigorous Human-Computer Interaction (HCI) product-development techniques applied to state-of-the-art EHR and PHR technologies. Prototypes will be developed and iteratively tested by diverse users and stakeholders and implemented within an EHR/PHR system to be installed by Inglis Foundation, a non-profit organization which provides residential and independent-living facilities as well as managed care and employment programs for people with disabilities. 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 EHRs/PHRs. Prototypes will model accessible solutions (content assessment, content creation and interactions, navigable interfaces and applications, and an accessibility metadata schema) and will be iteratively evaluated by people with disabilities and care providers. Validated approaches will be implemented within the commercial EHR/PHR system that Inglis selects to deploy throughout its programs and facilities.
  • 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 will 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.