To address health disparities, we need accurate and comprehensive demographic data

Within the first months of the COVID-19 outbreak in the United States, available data showed that communities of color were being disproportionately affected by the coronavirus, with higher rates of infection and deaths. It was also evident from state and federal government data that there were significant gaps and inconsistencies in the reporting of race and ethnicity data.

The American Kidney Fund (AKF) highlighted this in written testimony to the House Ways and Means and Energy and Commerce Committees, in which we emphasized the need for comprehensive and timely race and ethnicity data in order to better address the disproportionate impact of COVID-19 on minority populations. We also joined more than 200 other organizations in sending letters to Congress and the U.S. Department of Health and Human Services urging them to ensure COVID-19 surveillance systems are updated to collect data on patients’ race, ethnicity, sex, age, primary language, sexual orientation, disability status, gender identity and socioeconomic status in line with federal standards.  

Issues with inconsistent demographic data have continued throughout the pandemic and have drawn attention from lawmakers and the media, including a Freedom of Information request from the New York Times that resulted in the release of more data from the Centers for Disease Control and Prevention (CDC) and a fuller analysis of the racial inequity of the coronavirus. Even with the additional data, race and ethnicity information was missing from more than half the cases.

AKF has also continued to advocate for better demographic data. We wrote and sent a letter, signed by 18 patient and disease organizations, to Senate and House leadership urging Congress to dedicate additional resources to modernize public health data systems. The inconsistency in the collecting and reporting of demographic data is due in large part to antiquated public health data systems at local, state, tribal and territorial public health departments. Years of underfunding for these systems, and in public health in general, has led to a fragmented infrastructure in which not all the critical information is able to flow seamlessly and efficiently from providers and labs to public health departments and federal agencies. This leads to missing or incomplete data that is essential in responding to a public health emergency.

Modernizing public health data systems will help address the gaps in data we have seen during the COVID-19 pandemic, particularly with respect to race and ethnicity information and other patient characteristics. Having accurate and comprehensive data about the impact of COVID-19 on minorities is an essential component to developing policy solutions to tackle racial and ethnic health disparities. In our letter, we specifically asked Congress to include the Saving Lives Through Better Data Act (S. 1793) in the next COVID-19 legislative package. The bill would establish a grant program for public health data system modernization and authorize $100 million each for fiscal years 2020 through 2024.


About the Author

Mike Ly

Mike Ly is the director of public policy at the American Kidney Fund.