Accessibility and Beyond: Designing Consumer Health IT for Disabled Individuals (Virginia)

Project Final Report (PDF, 423.59 KB) Disclaimer

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Summary:

Successful patient engagement necessitates that resources align with the needs and preferences of diverse individuals, including those with disabilities. As healthcare shifts to home- and community-based settings, multiple forms of consumer health information technology (IT) are being created to support patients with their self-management responsibilities. However, the design of consumer health IT is rarely based on the needs and preferences of marginalized populations, whose members face barriers to technology use and active participation in their healthcare. In addition, developers rarely consult these individuals in the design of consumer products.

This project expanded on existing consumer health design guidance to include individuals with physical, sensory, and cognitive disabilities. The new guidance focused on one form of health IT: mobile health (mHealth) applications, and one functional domain: health information communication with social network members. To accomplish this goal, the research team sought to understand the challenges faced by individuals with disabilities when communicating with their social networks.

The specific aims of this project are as follows:

  • Assess individuals with disabilities’ existing health information communication practices with social network members from a systems perspective. 
  • Identify the challenges individuals with disabilities face in leveraging existing mobile consumer health IT solutions for health information communication with social network members from a systems perspective. 
  • In partnership with individuals with disabilities, generate descriptive and prescriptive design guidance for consumer health IT based on an explication of existing practices and challenges. 

This study employed a sequential, multi-method approach to empirically assess and collect design guidance from heath IT consumers with disabilities. Data were collected through interviews, task analyses, journals, and focus groups. Findings demonstrate that experiences with disability impact the mHealth functions and usability features needed for effective health management. For example, these individuals may communicate health information to social networks to advocate for improved quality of life; however, this functionality does not exist within mHealth applications. Additionally, design decisions based on aesthetics may preclude some individuals with disabilities from using the technology effectively. This study demonstrates the importance of partnering with individuals with disabilities when designing new or redesigning existing consumer health IT.

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Accessibility and Beyond: Designing Consumer Health IT for Disabled Individuals - Final Report

Citation:
Valdez, R. Accessibility and Beyond: Designing Consumer Health IT for Disabled Individuals - Final Report. (Prepared by University of Virginia under Grant No. R21 HS023849). Rockville, MD: Agency for Healthcare Research and Quality, 2018. (PDF, 423.59 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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Understanding and Designing Health IT for Persons With Disabilities

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.

“Research has shown that the impact of someone’s disability is changeable…and can be addressed, in part, through design.”
- 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.

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