Key Finding and Impact:
Health information communication for individuals with disabilities is multidimensional and includes conversations about support, disclosure, advocacy, and logistics. Informed changes to content, functionality, interfaces, and technology platforms increases health IT usability and usefulness for individuals with disabilities.
As individuals become more involved in the self-management of their healthcare needs, consumer health IT is increasingly tied to patient outcomes and engagement. It is well documented that people with disabilities face inequities when accessing healthcare, including consumer health IT. Little has been done, however, to address these disparities. To capture the needs of all patient populations, health IT design must be inclusive of individuals who face barriers to accessing healthcare, including those with physical, cognitive, and sensory disabilities.
Identifying the unique needs for disabled individuals.
- Dr. Rupa Valdez
Dr. Rupa Valdez and her University of Virginia-based research team aimed to improve access to health IT for individuals with disabilities. Dr. Valdez studied how this population communicated health information within their social networks and the challenges they encountered when accessing health IT. Individuals discussed necessary supports, conversations about how much information to disclose and to whom, statements about one’s disability and their rights as a person with a disability, and how their disability impacted their health communication and decision making. Using this information, she was then able to identify which communication characteristics and health IT features needed to be evaluated to guide the design of health IT responsive to the needs of individuals with disabilities. Dr. Valdez emphasizes that the needs of this population must be considered early and often in the design process; health IT developers should view individuals with disabilities as partners in health IT design and not make assumptions about the experiences, needs, and preferences of their customers.
Encouraging patient-centered health IT.
Dr. Valdez recommends that providers and healthcare administrators consider the patient’s limitations when selecting or implementing technology. Her research suggests that the role of patients and the general public, as advocates for change, will be crucial in encouraging health equity and enforcing disability rights in the future.