Executive Summary
Project Background
The Accessible Designs for Personal Health Records project has been investigating how the benefits of emerging medical information technologies can be expanded to fully include people with sensory and mobility disabilities, based on the principles of both accessibility and usability. This report presents our results from three activities:
- semi-structured interviews
- a Web survey
- baseline evaluation of three PHR systems for accessibility, usability and functionality
Project findings have contributed to the growing realization that while significant federal investment is accelerating the adoption of electronic health record systems (EHRs) and personal health records (PHRs) by hospitals, clinics, and consumers, people with disabilities are generally excluded from using these systems due to infrastructure limitations, inaccessible interface designs, and inaccessible content. However, the Project's in-depth interviews and survey have demonstrated that people with disabilities are in fact among those populations most likely to require or benefit from access to their own health records and from personalized online interactions with health care providers.
The Project's initial findings are intended to raise stakeholder awareness, influence public policy and inform the health IT industry about the disparities people with disabilities are experiencing as PHR adoption rises. To further the Project's goals, an accessible and usable PHR demonstration is being developed to represent a typical PHR's most-desired features, based on the stated needs of the surveyed population and as compared to the “meaningful use” criteria established by the Federal government.
Initial Findings
People with disabilities:
- Are high-volume consumers of health care
- Are sophisticated consumers of health care
- Are not satisfied with current non-PHR tools for managing health care
- Described technology innovations that map well to governmental standards for health IT
- Would benefit greatly from a usable and accessible PHR
Current PHR systems:
- Demonstrate disparity and variability in achieving accessibility, usability and functionality
- Can be easy to use, but inaccessible — or difficult to use, yet fully accessible
- Have accessibility issues that can be readily addressed
- Are only beginning to provide the information, resources and tools required to help consumers manage their own health and healthcare
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