Identifying systems-level barriers to complying with and expanding national race/ethnicity data disaggregation standards

The Foundation's initiative, Transforming Public Health Data Systems to Advance Health Equity (TPHD), was designed to fund national analyses and timely, short-term grantmaking to inform an expert panel that will recommend a comprehensive approach to support the transformation of data-related policies and practices in public health and health-related sectors to improve health equity, as well as recommend directions for RWJF's future strategic funding in this area. This grant supports a qualitative study to identify barriers across the health system that impede compliance with existing federal race and ethnicity data standards and to further surface obstacles to expanding those disaggregation standards. The study will use COVID-19 as an entry point to decipher systems failures related to race and ethnicity data that pre-existed and were exacerbated by the pandemic and those that were unique to the crisis. Public health surveillance of data by race and ethnicity provides indicators that are fundamental to understanding how the nation is performing on health disparities and to informing health equity solutions. The Office of Management and Budget (OMB) requires race and ethnicity data to adhere to standard categorical definitions (e.g., American Indian or Alaska Native, Asian, Black or African-American, Native Hawaiian or Other Pacific Islander, White, and Hispanic or Latino). While those standard categories have been crucial to assessing and monitoring health disparities, much variation exists within each grouping, masking vital differences in health outcomes. Disaggregating data in OMB race and ethnicity categories and strengthening data on other sociodemographic indicators that determine health are important steps in addressing health equity. The field has responded, and calls for race and ethnicity data disaggregation have gained increasing momentum over recent years. Despite this shift in the field, major gaps exist in race and ethnicity data collection and reporting by OMB standards, let alone in the more-nuanced disaggregation in each category. Further, the COVID-19 pandemic has shed light on the failures of a dysfunctional health system to collect, track, and report basic surveillance data by race and ethnicity. Deliverables will include a landscape analysis; expert interviews; an interim report in April 2021 to summarize preliminary findings; and a final report in December 2021. To maximize efficiencies and limit duplication, the grantee will coordinate with Ninez Ponce and her team at UCLA, who are providing training and technical assistance focused on statistical and methodological barriers, and the Network for Public Health Law, a potential TPHD grantee, which is proposing to investigate legal barriers.