Policy Brief

Reliable racial and ethnic demographic data play a critical role in addressing health disparities. Among other things, reliable data is central to measuring health trends, identifying health disparities between segments of the population, and rooting out inequities in health care. Public health experts have long recognized that disaggregated race and ethnicity data—data that captures diverse subgroups within major race and ethnic categories of people—is a critical component to addressing racial health disparities. However, in previous years there have been no serious efforts at the federal level to collect health data beyond overgeneralized racial and ethnic groups. This has led to significant gaps in the data and, consequently, our understanding of the scope and underlying causes of health disparities among vulnerable communities.

This brief provides a discussion of current data collection methods, their deficiencies, and how those deficiencies led to significant gaps in the health data collected during the COVID-19 pandemic. It then provides potential recommendations for how data collection methods can be improved. The Lawyers’ Committee for Civil Rights Under Law conducted an analysis and survey of current data collection practices at the federal and state level to understand the impact of the pandemic on marginalized communities. Our findings from the survey revealed: (1) the existing methods of collecting medical data significantly underrepresented the true impact of the pandemic on these communities, and (2) failed to capture information essential for understanding the root causes of health disparities. To address these problems, this brief recommends updating data collection practices and infrastructure to incorporate social determinants of health and further disaggregation of race and ethnicity classifications to better develop equitable policies that address health disparities and promote civil rights enforcement.