Informatics-enabled citizen science to advance health equity

Author:

Valdez Rupa S123,Detmer Don E1,Bourne Philip4,Kim Katherine K5ORCID,Austin Robin6,McCollister Anna7,Rogers Courtney C2,Waters-Wicks Karen C389

Affiliation:

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

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.

Publisher

Oxford University Press (OUP)

Subject

Health Informatics

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