Informatics-enabled citizen science to advance health equity

Rupa S Valdez; Don E Detmer; Philip Bourne; Katherine K Kim; Robin Austin; Anna McCollister; Courtney C Rogers; Karen C Waters-Wicks

doi:10.1093/jamia/ocab088

Informatics-enabled citizen science to advance health equity

J Am Med Inform Assoc. 2021 Aug 13;28(9):2009-2012. doi: 10.1093/jamia/ocab088.

Authors

Rupa S Valdez^{1

2

3}, Don E Detmer¹, Philip Bourne⁴, Katherine K Kim⁵, Robin Austin⁶, Anna McCollister⁷, Courtney C Rogers², Karen C Waters-Wicks^{3

8

9}

Affiliations

¹ Department of Public Health Sciences, University of Virginia, Charlottesville, Virginia, USA.
² Department of Engineering Systems and Environment, University of Virginia, Charlottesville, Virginia, USA.
³ Advisory Board, Residents for Respectful Research, Public Housing Association of Residents, Charlottesville, Virginia, USA.
⁴ School of Data Science and Department of Biomedical Engineering, University of Virginia, Charlottesville, Virginia, USA.
⁵ Betty Irene Moore School of Nursing, University of California-Davis, Sacramento, California, USA.
⁶ School of Nursing, University of Minnesota, Minneapolis, Minnesota, USA.
⁷ Four Lights Consulting LLC, Washington, District of Columbia, USA.
⁸ Department of Community Engagement, Albemarle County Public Schools, Charlottesville, Virginia, USA.
⁹ Department of Humanities, Piedmont Virginia Community College, Charlottesville, Virginia, USA.

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.

Keywords: citizen science; health equity; health informatics; patient engagement; precision health.

MeSH terms

COVID-19
Citizen Science*
Community-Based Participatory Research*
Health Equity*
Humans
Informatics*
Pandemics