4.6 Article

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

Journal

Publisher

OXFORD UNIV PRESS
DOI: 10.1093/jamia/ocac136

Keywords

disability and access; digital health; research guidelines; health equity; universal design

Funding

  1. Agency for Healthcare Research and Quality [1R21 HS023849-01]
  2. National Science Foundation Graduate Research Fellowship
  3. 4-VA Collaborative Research Grant
  4. National Institutes of Health
  5. National Institute of Nursing Research (NINR) [R21NR017991]

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As the field of informatics expands, there is an opportunity to address health disparities by focusing on the disability community. Taking a holistic approach to disability and considering its intersections with other identities can enhance digital health technologies. The urgency for this approach is grounded in ethical, legal, and design-related reasons.
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.

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