Literature DB >> 35972753

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

Rupa S Valdez1,2,3, Sophie E Lyon1, Claire Wellbeloved-Stone3, Mary Collins4, Courtney C Rogers2, Kristine D Cantin-Garside5, Diogo Gonclaves Fortes6, Chung Kim7, Shaalini S Desai1, Jessica Keim-Malpass8, Raja Kushalnagar9.   

Abstract

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.
© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Entities:  

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

Mesh:

Year:  2022        PMID: 35972753      PMCID: PMC9552212          DOI: 10.1093/jamia/ocac136

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   7.942


  36 in total

1.  Building and sustaining community-institutional partnerships for prevention research: findings from a national collaborative.

Authors:  Sarena D Seifer
Journal:  J Urban Health       Date:  2006-11       Impact factor: 3.671

2.  The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants.

Authors:  Christina Nicolaidis; Dora Raymaker; Steven K Kapp; Amelia Baggs; E Ashkenazy; Katherine McDonald; Michael Weiner; Joelle Maslak; Morrigan Hunter; Andrea Joyce
Journal:  Autism       Date:  2019-04-03

3.  Using community-based participatory research as a guiding framework for health disparities research centers.

Authors:  Trinh-Shevrin Chau; Nadia Islam; Darius Tandon; Henrietta Ho-Asjoe; Mariano Rey
Journal:  Prog Community Health Partnersh       Date:  2007

4.  Good intentions are not enough: how informatics interventions can worsen inequality.

Authors:  Tiffany C Veinot; Hannah Mitchell; Jessica S Ancker
Journal:  J Am Med Inform Assoc       Date:  2018-08-01       Impact factor: 4.497

5.  Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies.

Authors:  Dianne Rios; Susan Magasi; Catherine Novak; Mark Harniss
Journal:  Am J Public Health       Date:  2016-10-13       Impact factor: 9.308

6.  Declining Prevalence of Hearing Loss in US Adults Aged 20 to 69 Years.

Authors:  Howard J Hoffman; Robert A Dobie; Katalin G Losonczy; Christa L Themann; Gregory A Flamme
Journal:  JAMA Otolaryngol Head Neck Surg       Date:  2017-03-01       Impact factor: 6.223

7.  Practical strategies for promoting full inclusion of individuals with disabilities in community-based participatory intervention research.

Authors:  Dena Hassouneh; Amana Alcala-Moss; E McNeff
Journal:  Res Nurs Health       Date:  2011-04-06       Impact factor: 2.228

8.  Physicians' Perceptions Of People With Disability And Their Health Care.

Authors:  Lisa I Iezzoni; Sowmya R Rao; Julie Ressalam; Dragana Bolcic-Jankovic; Nicole D Agaronnik; Karen Donelan; Tara Lagu; Eric G Campbell
Journal:  Health Aff (Millwood)       Date:  2021-02       Impact factor: 6.301

9.  Ensuring full participation of people with disabilities in an era of telehealth.

Authors:  Rupa S Valdez; Courtney C Rogers; Henry Claypool; Lucy Trieshmann; Olivia Frye; Claire Wellbeloved-Stone; Poorna Kushalnagar
Journal:  J Am Med Inform Assoc       Date:  2021-02-15       Impact factor: 4.497

10.  Informatics-enabled citizen science to advance health equity.

Authors:  Rupa S Valdez; Don E Detmer; Philip Bourne; Katherine K Kim; Robin Austin; Anna McCollister; Courtney C Rogers; Karen C Waters-Wicks
Journal:  J Am Med Inform Assoc       Date:  2021-06-21       Impact factor: 4.497

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  1 in total

1.  Meeting the information and communication needs of health disparate populations.

Authors:  Suzanne Bakken
Journal:  J Am Med Inform Assoc       Date:  2022-10-07       Impact factor: 7.942

  1 in total

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