TFAH Leadership Blog:

Advancing Public Health and Health Equity
May | 2024

Revised Federal Standards on Race and Ethnicity Data Will Mean More Equitable and More Effective Health Services

By J. Nadine Gracia, M.D., MSCE, President and CEO

In my previous role as Deputy Assistant Secretary for Minority Health and Director of the Office of Minority Health at the U.S. Department of Health and Human Services (HHS), I experienced daily how vitally important disaggregated data and equitable and inclusive data systems are to promoting health, creating opportunity, and advancing health equity. In fact, the establishment of the HHS Office of Minority Health (OMH) in 1986 was one of the most significant outcomes of a landmark federal report, the Report of the Secretary’s Task Force on Black and Minority Health, commonly known as the Heckler Report. The Heckler Report marked the first time the U.S. government convened a group of health experts to conduct a comprehensive study of the health status of populations of color and documented through data persistent racial and ethnic health disparities. The Heckler Report and advocates also called for further efforts to improve the quality and completeness of data to understand and address the health status of all populations of color. During my tenure, OMH partnered with amazing community leaders, researchers, and advocates across the country who championed data equity as essential to health. And OMH had the great privilege to help establish and advance the pivotal data collection standards on race, ethnicity, sex, primary language, and disability status, as required by Section 4302 of the Affordable Care Act, to strengthen federal data collection efforts in national population health surveys.

Access to timely, accurate, and comprehensive population data is key to developing effective health policies and programs; and is particularly important to identifying, understanding, and addressing health disparities.  For these reasons, I applaud the Office of Management and Budget’s revised Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (Directive No. 15) and the implementation step that federal agencies must submit publicly available agency action plans for complete compliance with the updated standards.

These revised standards, released in March 2024 will allow for population data that is disaggregated into smaller subgroups meaning that subpopulation groups will be more accurately reflected in federal data sets. Trust for America’s Health (TFAH) is proud to be one of many organizations that submitted comments on the proposed revised standards, upholding our commitment to data equity.

Disaggregated data will provide policymakers, public health and healthcare systems, other practitioners and service providers, and community-based organizations with a more precise and detailed understanding of a community’s health status, and thereby the ability to design and target policies, programs, services, and resources in more effective ways in communities, including in under-resourced communities.

As the U.S. population continues to become more and more diverse, the imperative for federal and health data systems to accurately reflect that diversity is even more critical for the health, well-being, and prosperity of our nation.  Health disparities impose a significant cost on our country – both in terms of the impact on people’s lives and an economic impact, where these inequities account for approximately $320 billion in annual healthcare spending.  Data are used at all levels – federal, state, local, tribal, and territorial – and across sectors to make critical decisions, including the allocation of resources and funding. For far too long, some communities and populations have not been represented or have been grouped into broad categories in the data that inform these decisions. What the revised federal data standards on race and ethnicity represent is the next meaningful step in the journey toward health equity, by unlocking the power of disaggregated data to promote health for all. Disaggregated data can help further catalyze transformations in structures and systems that contribute to longstanding health and socioeconomic disparities. And disaggregated data uplift the importance of communities being seen and represented. Let’s seize this moment to modernize data collection and reporting and create consequential progress toward every person and community having the opportunity to reach their full potential for optimal health.