DEVELOPING PATIENT EDUCATION MATERIALS TO ADDRESS THE NEEDS OF PATIENTS WITH SENSORY DISABILITIES

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DEVELOPING PATIENT EDUCATION MATERIALS TO ADDRESS THE NEEDS OF PATIENTS WITH SENSORY DISABILITIES There are at least 16.2 million adults who identify as being deaf or hard-of-hearing (DHH) and 12.8 million who report significant vision difficulty (i.e., blind/vision impairment [B/VI]). People with sensory disabilities (PWSDs) are a growing priority population due to significant health disparities, including poorer mental health and physical health. Despite poorer health, PWSDs struggle with unmet medical needs, difficulties accessing and navigating health care and challenges with managing their health. Health education and promotion programs, including consumer health information resources, are often inaccessible and not tailored for these individuals, exacerbating above inequities. In addition, accessible health resources, such as ASL videos on “DeafHealth.org” and MedlinePlus, are no longer available. Prior research indicates that PWSDs are at risk for inadequate health literacy, poorer access to information resources, and disparities in advance care planning and diabetes prevention and management. Therefore, the primary objective of this NLM G08 information resource proposal is to develop best practices in digital and non -digital patient health education for PWSDs and demonstrate these best practices in use by developing materials on advance care planning and diabetes prevention. This will be accomplished through three aims. (1) Assess the information and accessibility needs of PWSDs to identify optimal user-centered design for patient health education; (2) Develop patient health education assessment checklists centering the needs of PWSDs; and (3) Demonstrate the utility of the checklists as guides in the development and curation of accessible patient health education for PWSDs focused on advance care planning and diabetes . To guide the above work, an Advisory Board of patients with sensory disabilities and librarians with or serving those with sensory disabilities will be convened. Representatives on this Advisory Board will advise the project team, provide expertise on centering the accessibility needs of people with sensory disabilities, and assist with review of materials. This information will be used to generate a checklist and practice recommendations for health educational programs and information resource developers in order to meet the unique health educational needs of PWSD experiencing health disparities and comply with disability based civil rights laws (Section 504 of the Rehabilitation Act of 1973, which covers federally funded programs; the 1990 Americans with Disabilities Act (ADA) and 2008 ADA Amendments Act; and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act) that mandate accessible health education materials.