As medical records transition from paper to electronic, healthcare consumers hope to discover new and more effective ways to become more engaged with their healthcare information and providers. Methods and standards to make information technology accessible for people with disabilities have been developed for decades, yet adoption of these methods has been inconsistent. When it comes to personal health records, it is essential that new systems be fully accessible to people with disabilities. Instead of retrofitting existing systems to be accessible or addressing accessibility late in the development process, what if PHRs were developed from the “ground up” for people with disabilities? What would such a system look like? How would it behave? Would it be both accessible and more usable to everyone? Beyond accessibility, what are the healthcare needs of people with disabilities that may differ or go beyond the needs of other users? Many people with disabilities are deeply experienced consumers of healthcare. Would developing a system to meet needs of people with disabilities also have benefits for other patients, such as those experiencing a temporary or permanent disability due to injury, illness or aging? Can the study of people with disabilities lead to innovative solutions for everyone?
Answering these questions is the goal of the Accessible Designs for Personal Health Records Project, a collaboration of the WGBH Educational Foundation's National Center for Accessible Media (NCAM), the Center for Biomedical Informatics (CBMI) at the Children's Hospital of Philadelphia and the Inglis Foundation. The project is funded by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education grant award #H133G110095.
The project seeks to unite accessibility and usability to inform the future development of health information technologies that can be effective for all users. Drawing on both human-computer interface (HCI) best practices and Web and software accessibility standards, we aim to achieve “usable accessibility.” As described by Henry (2002), “...accessibility can be approached as a subset of usability. Put simply, usability means designing a user interface that is effective, efficient, and satisfying. In this context of usability, accessibility means designing a user interface to be effective, efficient, and satisfying for more people in more situations. However, satisfaction is much less an issue with accessibility. Accessibility is more concerned with making interfaces perceivable, operable, and understandable. That interaction is effective and efficient becomes more important when products are part of education and employment.” We would add that healthcare is a highly relevant domain for this discussion, where the ability of consumers to efficiently and effectively participate in managing their care can pay huge dividends in wellness and independence.
As a NIDRR Field-Initiated Development grant, the goal of the project is to apply a methods-based approach in developing an interactive PHR prototype that demonstrates new system designs that are accessible, usable and highly functional. The project is focused on the needs of consumers with physical and sensory disabilities; consumers with cognitive disabilities will certainly also need accessible healthcare information, but because those needs can differ from the population studied, they are not in scope for this project. This report details the results of the Project's initial focus on surveying and enumerating the health information requirements of people with disabilities and provides an assessment of the current state of PHR accessibility, functionality, and usability. These results serve as the foundation of the Project's development of PHR prototypes, and both this report and the subsequent prototypes will be presented in a number of policy forums and will be available on the project web site: http://healthitaccess.wgbh.org
 Henry, S.L. "Another -ability: Accessibility Primer for Usability Specialist." Accessed at http://www.uiaccess.com/upa2002a.html
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