Engaging the disability community in informatics research: rationales and practical steps

J Am Med Inform Assoc. 2022 Oct 7;29(11):1989-1995. doi: 10.1093/jamia/ocac136.


As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

Keywords: digital health; disability and access; health equity; research guidelines; universal design.

Publication types

  • Research Support, U.S. Gov't, Non-P.H.S.
  • Research Support, U.S. Gov't, P.H.S.
  • Research Support, N.I.H., Extramural

MeSH terms

  • Disabled Persons*
  • Humans
  • Informatics