Participatory Approaches to Addressing Missing COVID-19 Race and Ethnicity Data

Abstract

Varying dimensions of social, environmental, and economic vulnerability can lead to drastically different health outcomes. The novel coronavirus (SARS-CoV-19) pandemic exposes how the intersection of these vulnerabilities with individual behavior, healthcare access, and pre-existing conditions can lead to disproportionate risks of morbidity and mortality from the virus-induced illness, COVID-19. The available data shows that those who are black, indigenous, and people of color (BIPOC) bear the brunt of this risk; however, missing data on race/ethnicity from federal, state, and local agencies impedes nuanced understanding of health disparities. In this commentary, we summarize the link between racism and COVID-19 disparities and the extent of missing data on race/ethnicity in critical COVID-19 reporting. In addition, we provide an overview of the current literature on missing demographic data in the US and hypothesize how racism contributes to nonresponse in health reporting broadly. Finally, we argue that health departments and healthcare systems must engage communities of color to co-develop race/ethnicity data collection processes as part of a comprehensive strategy for achieving health equity.