US Census Bureau Data Linkage Bridges Gaps in Race Data Collection

Race data collection is critical to understanding and addressing racial and ethnic health disparities, stated researchers from the United States Census.

However, there is significant variation in the completeness and accuracy of race data collected in Medicaid across the United States. New data showed that linking Medicaid data with Census Bureau data could close race reporting gaps in health records.

According to recent figures, roughly 19 percent of Medicaid beneficiaries lacked race/ethnicity information, but the percentage varied widely across states. In 18 states, less than 10 percent of beneficiaries had missing information, while Nebraska, Rhode Island, and Tennessee had no race/ethnicity information for any Medicaid beneficiaries.

The US Census Bureau has launched the Enhancing Health Data (EHealth) Program, an initiative to expand the utility of Census Bureau data by linking it with new health data sources. The program primarily sought to track racial and ethnic disparities in health more effectively.

The program used 2016 Medicaid enrollment data from all 50 states and the District of Columbia, combining race and ethnicity information into one measure.

Researchers then linked race/ethnicity information from the 2000 and 2010 censuses with the 2001-2019 ACS 1-year estimates, and mortality data from the Census Numerical Identification File.

The EHealth program also incorporated mortality data from the Census Numerical Identification File between January 2016 and June 2021 to assess the impact of fragmented data on disparate health outcomes.

The study findings showed that by utilizing the data linkage strategy employed in this study, there is potential to enhance the detection and reduction of racial/ethnic disparities while also decreasing the proportion of Medicaid records missing race/ethnicity information by nearly 63 percent

Researchers highlighted the potential of Census Bureau data to complement existing health records frequently lacking vital demographic information, such as race/ethnicity.

"Results from this research demonstrate significant potential for using Census Bureau data to complement existing health records that commonly lack important demographic characteristics, such as race/ethnicity,” the researchers wrote. “Overall, we find that enhancing race/ethnicity information in Medicaid data with restricted Census Bureau microdata is feasible and can advance our understanding of population health."

This newly discovered data comes alongside broader industry-wide efforts to enhance data collection practices, particularly in the areas of race, ethnicity, language (REL), sexual orientation, and gender identity (SOGI).

Improving the collection of REL and SOGI data is crucial to identify health disparities in historically marginalized communities and enabling evidence-based interventions for achieving health equity.

Standardized EHR documentation presents an opportunity for insurers, healthcare providers, and patient advocates to design and implement targeted health solutions that better meet the needs of disproportionately affected communities. Through the adoption of comprehensive data collection standards, healthcare providers can gather more accurate and relevant information to address the unique healthcare challenges faced by marginalized populations.