The 2020 Census revealed a country increasingly characterized by its diverse population. The proportion of non-Hispanic white people, though still the largest racial or ethnic group, has decreased as the nation’s overall diversity index climbs. This dynamic landscape demands a reevaluation of federal regulations about population data collection which have remained unchanged for over two decades.
The United States finds itself grappling with the complexities of its ever-evolving racial and ethnic composition and the interplay between race and health. It is well-documented that race, while a sociopolitical construct, is inextricably linked to health outcomes. Having complete and accurate data about all population groups, while also protecting individual privacy, is key to effectively addressing the myriad public health challenges facing the nation and contending with structural discrimination. Trust for America’s Health (TFAH) supports a reevaluation of the way the nation collects and analyzes race and ethnicity data. As the country’s demographics continue to shift, so too must our approach to understanding and addressing health disparities.
In June 2022, Dr. Karin Orvis, Chief Statistician of the United States, announced her office’s intention to begin a formal review process to revise the Office of Management and Budget’s (OMB) Statistical Policy Directive No. 15 (Directive No. 15): Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity. Six months later, an interagency technical working group spanning 20 federal agencies published an initial set of recommendations and invited public comment. TFAH submitted comments, applauding OMB for undertaking the process as well as the working group’s governing principles and proposals, and offering technical input.
The pervasive influence of structural racism and discrimination in the U.S. has led to stark disparities in health and well-being. For instance, Black Americans, burdened by the legacy of redlining and underinvestment in communities, experience higher rates of chronic diseases such as diabetes, hypertension, obesity, asthma, and heart disease than their white counterparts. Furthermore, their life expectancy at birth is nearly six years lower than that of white Americans.
The urgent need for accurate and comprehensive race and ethnicity data is highlighted by a series of health crises, from the maternal health crisis among Black women, owed to factors such as variation in healthcare quality, underlying chronic conditions, structural racism, and implicit bias, to the disproportionate impact of COVID-19 on people of color. As we strive to address these issues, precise data can illuminate the unique needs of different populations, helping to guide resource allocation and the development of targeted interventions.
For example, as the COVID-19 pandemic unfolded, it became evident that communities of color were disproportionately affected. Race and ethnicity data, while uneven across jurisdictions, proved invaluable in pinpointing these disparities, catalyzing in many places a more equitable distribution of tests, vaccines, and healthcare resources. Furthermore, such data has been critical in deciphering the disparate impacts of events like Hurricane Katrina on distinct New Orleans zip codes and unmasking the systemic racism at the heart of the Flint water crisis.
While these health crises have been acknowledged, we continue to require accurate data to comprehend the disaggregated effects of these events, and others, on particular population subgroups, the recovery and resilience of specific subgroups, and the outcomes experienced by these subgroups. This understanding will ensure the strategic development and application of policies and programs, ultimately bolstering our collective pursuit of health equity.
America’s ever-changing demographics, shaped by immigration and migration patterns, necessitate a reevaluation of the current racial and ethnic categories used in the Census and other data sets. Updated and accurate data can expose the distinct health challenges faced by different subgroups, enabling policymakers and public health officials to respond effectively. For example, accurate data could reveal disparities in access to nutrient-dense foods or mental health services, providing valuable insight for targeted public health initiatives.
A more granular approach to race and ethnicity data could also help identify and address additional public health challenges, such as subgroup-specific obesity trends, mental health conditions, and substance use disorder rates. By understanding the needs of different populations, public health officials can develop targeted interventions that address specific needs, such as culturally-sensitive dietary education and exercise programs—bolstered by communities that foster and enable healthful lifestyles, rather than obstructing them—or mental health services that are thoughtfully tailored to the experiences of specific communities.
TFAH underscores the significance of reevaluating Directive No. 15 in order to more accurately account for the variegated tapestry of contemporary America. By refining our methodology for gathering and studying race and ethnicity data—in part by enhancing data collection techniques and working to ensure that the assembled information genuinely represents the experiences of diverse populations—we can more adeptly comprehend public health needs within the United States and devise equitable resolutions for our most urgent health challenges.
As the primary entities responsible for implementing public health policies and interventions, state and local governments are uniquely positioned to address the specific needs of their diverse populations. Therefore, it is important for state and local governments to update and improve their data collection methods in a manner similar to what the OMB is proposing. Collaboration between federal, state, and local governments, as well as community organizations, is key to improved data collection and sharing. Through these efforts, state and local governments can align their data collection practices with any updated OMB standards.
In this era of rapid demographic change, the quest for health equity demands a renewed commitment to complete, accurate, actionable data. As we strive for a more equitable and inclusive society, it is imperative that our approach to public health reflects and respects the unique experiences of all Americans. Only by understanding the intricate connections between race, ethnicity, and health can we begin to dismantle the structural barriers that perpetuate disparities and chart a course towards a healthier, more equitable future for all.