Literature DB >> 34151980

Informatics-enabled citizen science to advance health equity.

Rupa S Valdez1,2,3, Don E Detmer1, Philip Bourne4, Katherine K Kim5, Robin Austin6, Anna McCollister7, Courtney C Rogers2, Karen C Waters-Wicks3,8,9.   

Abstract

The COVID-19 pandemic has once again highlighted the ubiquity and persistence of health inequities along with our inability to respond to them in a timely and effective manner. There is an opportunity to address the limitations of our current approaches through new models of informatics-enabled research and clinical practice that shift the norm from small- to large-scale patient engagement. We propose augmenting our approach to address health inequities through informatics-enabled citizen science, challenging the types of questions being asked, prioritized, and acted upon. We envision this democratization of informatics that builds upon the inclusive tradition of community-based participatory research (CBPR) as a logical and transformative step toward improving individual, community, and population health in a way that deeply reflects the needs of historically marginalized populations.
© The Author(s) 2021. 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:  citizen science; health equity; health informatics; patient engagement; precision health

Year:  2021        PMID: 34151980     DOI: 10.1093/jamia/ocab088

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   4.497


  2 in total

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

Authors:  Rupa S Valdez; Sophie E Lyon; Claire Wellbeloved-Stone; Mary Collins; Courtney C Rogers; Kristine D Cantin-Garside; Diogo Gonclaves Fortes; Chung Kim; Shaalini S Desai; Jessica Keim-Malpass; Raja Kushalnagar
Journal:  J Am Med Inform Assoc       Date:  2022-10-07       Impact factor: 7.942

2.  Building trust in research through information and intent transparency with health information: representative cross-sectional survey of 502 US adults.

Authors:  Sabrina Mangal; Leslie Park; Meghan Reading Turchioe; Jacky Choi; Stephanie Niño de Rivera; Annie Myers; Parag Goyal; Lydia Dugdale; Ruth Masterson Creber
Journal:  J Am Med Inform Assoc       Date:  2022-08-16       Impact factor: 7.942

  2 in total

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