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April 22, 2025
Quarterly Opinion
Ninez A. Ponce
Tara Becker
Riti Shimkhada
AJ Scheitler
Susan Babey
Apr 8, 2025
Mar 27, 2025
Sep 25, 2024
Back to The Milbank Quarterly Opinion
The United States is a highly diverse country, and we have the data to prove it. But recent political events have data custodians and users across the country asking an important question—if the federal government is backing away from its historical role as a leader in advancing data quality and data democracy, what does it mean for the future of representation and evidence-based policy development? The answer has wide-ranging implications.
The federal government is the backbone of the robust research data collection and knowledge creation ecosystem that exists within the United States. Much of the research data infrastructure in the United States relies on data collected directly by the federal government, research funding received from the federal government, and/or population estimates derived from federal data to benchmark or standardize population estimates.1 In recent years, there has been a shift within this data ecosystem toward improving representation and visibility of populations who historically have been overlooked or marginalized.2-4 To this end, in March 2024, the Office of Management and Budget released a revised version of Statistical Policy Directive 15 (SPD 15), Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, which provides guidance for the collection, tabulation, and dissemination of race and ethnicity data across the federal government. This revision was the first update to these standards since 1997. The 2024 SPD 15 improved race and ethnicity data collection by combining the Hispanic/Latino and race questions into a single question, introducing a new category for Middle Eastern and North African (MENA) people, and requiring the collection of detailed ethnicity information within each racial or ethnic category to allow for greater data disaggregation. Together, these changes are expected to produce higher-quality race and ethnicity data by ensuring more consistent classification of ethnic subgroups and reducing the number of people who do not see themselves reflected within the response options provided.
These changes were the culmination of many years of investment and research on best practices in measuring race and ethnicity. Over the past decade, parallel efforts to improve and expand federal data collection on sexual orientation and gender identity (SOGI) also emerged. In 2021, the Sexual and Gender Minority Research Office (SGMRO) at the National Institutes of Health led a collaborative effort across 19 NIH entities to commission a report from the National Academies of Sciences, Engineering, and Medicine to evaluate current research and propose recommendations that outline best practices for collecting high quality measures of these concepts that could also be used to identify transgender and intersex populations. This report, Measuring Sex, Gender Identity, and Sexual Orientation (2022), became a catalyst for expanding SOGI data collection efforts throughout the federal government and motivated an infusion of funding to the SGMRO to enable it to coordinate and support SOGI data collection efforts across federal agencies.
Increases in the US Census Bureau’s budget for the 2024-2025 fiscal years allowed the Bureau to move forward on implementing the 2024 SPD 15 guidelines and begin national testing of SOGI measures. The US Census Bureau adopted a plan to implement revised race and ethnicity measures consistent with the 2024 SPD 15 guidelines beginning with the 2027 wave of the American Community Survey (ACS). In addition, the Census Bureau moved forward with plans to introduce new measures of SOGI to its flagship data products, including the American Community Survey and the 2030 decennial census. The introduction of these SOGI measures to census data products would provide the first official estimates of the size and characteristics of sexual and gender minority populations within the United States. As preparation, in 2024, the Census Bureau conducted large-scale split-sample testing of SOGI questions in representative samples of the population, supplemented by multiple rounds of cognitive testing of these measures. Together these changes in race and ethnicity and SOGI data collection represented an historic investment in improving data democracy.
However, these advances are now at risk.
On January 20, 2025, soon after being sworn into office, President Donald Trump signed an executive order that sought to redefine how the terms “sex” and “gender” are used within the federal government, deny the existence of gender identity, and prevent the collection of data allowing individuals to identify as transgender and gender expansive. It equated the collection of gender and gender identity with the intent to spread specific “gender ideologies.” The claims made in this executive order are contradicted by scientific research. Nevertheless, many federal agencies, including the US Census Bureau and agencies housed within the National Institutes of Health, reportedly received orders to stop work on all projects involving gender identity or transgender people in response to this executive order. As a result, data collected as part of the 2024 ACS SOGI testing has not been analyzed and reports on the cognitive testing have not been cleared for release.
The impact of the executive order has extended far beyond stop work orders for existing projects. In late January, federal agencies began to eliminate any references to transgender or gender expansive people from their public-facing websites. On January 31, 2025, federal datasets that included measures of gender or gender identity began to be removed from federal websites.5 These included datasets such as the Behavioral Risk Factor Surveillance System, the Youth Risk Behavior Surveillance System, and the Household Pulse Survey. This mass disappearance of data that was previously publicly available was only halted when a federal judge issued an injunction ordering the data and websites to be restored to their previous condition while legal challenges to the executive order worked their way through the court system.
These efforts to “disappear” federal data sent a shockwave through the research community. Although the recent nature of the expansion of SOGI data collection meant that only a subset of federal data sets included gender identity measures, many more data sets remain at risk of being removed or altered if these executive orders remain in place. On January 20, Donald Trump signed a second executive order that banned the use of programs that promote “DEI” (diversity, equity, and inclusion) within the federal government. The imprecise wording of this executive order has led many agencies to broadly interpret it as banning any efforts to identify or address disparities, particularly those related to race and ethnicity or gender. Such a broad application appears to have driven the decision to pause data collection for the Pregnancy Risk Assessment Monitoring System, which does not include measures of gender identity, but was designed to address racial and ethnic and other disparities in maternal mortality. This suggests that all federal data systems that are designed to measure and address the experiences of members of protected classes could be at risk of removal or modification.
As of this date, the 2024 SPD 15 remains in place; however, it is not clear whether the current administration is requiring federal agencies to meet the September 28, 2025, deadline to develop a plan to implement the 2024 SPD 15 guidelines. Nor is it clear whether they are allowing existing implementation plans to move forward. Most of the supporting reports and materials produced by the SPD 15 working groups to aid in implementation have been removed from the SPD 15 revision web page. In addition, it is not clear which federal data collection efforts that are currently in the field have been modified in response to these or other executive orders, although the Census Bureau submitted a non-substantive change request to the Office of Management and Budget on February 14, 2025 to remove questions on gender identity from the Household Trends and Outlook Pulse Survey. The limited information that is available suggests that rather than expanding efforts to improve data democracy at the federal level, particularly for transgender and gender expansive populations, these efforts will contract in the near future.
The administration’s efforts to remove public data sets have been met with considerable public, legal, and political pushback. Similar challenges may be necessary to ensure that high-quality data that include detailed measures of protected classes continue to be collected and made publicly available. The loss of access to federal data would be difficult to adapt to, as there is no clear replacement for the nationally representative data collected by the US Census Bureau. Nonetheless, state, Tribal, and local public health and other departments typically have the legal power to gather and share disaggregated population-level data.6 Thus, these non-federal entities, as well as independent researchers and survey administrators can play a central role in advancing data democracy and improving measurement at this time. Efforts to promote equitable data collection practices can help to fill anticipated data gaps and ensure that no one is left behind. Crucial activities include continuing to expand data collection efforts to ensure representation of small and understudied populations, developing methods to implement the 2024 SPD 15 guidelines that do not rely on federal inputs, and testing modifications to SOGI questions to better reflect changes in terminology. Jointly, work to restore the federal standards and advance state-level and local-level innovations can create a data ecosystem that serves the diversity of this nation.
Smith SK, Tayman J, Swanson DA. A practitioner’s guide to state and local population projections: Springer; 2013.
Ponce NA, Shimkhada R, Adkins-Jackson PB. Making Communities More Visible: Equity-Centered Data to Achieve Health Equity. Milbank Q 2023;101:302-32.
Ponce NA, Shimkhada R, Scheitler AJ, Becker T, Babey S. Without Data Equity, We Will Not Achieve Health Equity. Milbank Quarterly Opinion 2024.
Ponce NA, Becker T, Shimkhada R. Breaking Barriers with Data Equity: The Essential Role of Data Disaggregation in Achieving Health Equity. Annu Rev Public Health 2025.
Freilich J, Price WN, 2nd, Kesselheim AS. Disappearing Data at the U.S. Federal Government. N Engl J Med 2025.
Disaggregation of Public Health Data by Race & Ethnicity: A Legal Handbook, Network for Public Health Law (December 2022), https://www.networkforphl.org/resources/data-disaggregation-handbook
Ninez A. Ponce, PhD, MPP, directs the UCLA Center for Health Policy Research and holds an Endowed Chair in the Department of Health Policy and Management at the UCLA Fielding School of Public Health. She is the Principal Investigator or the California Health Interview Survey, the largest state population health survey in the nation. She champions data equity in public health, stressing inclusive data collection for equitable outcomes. With a focus on marginalized communities, Dr. Ponce works to improve healthcare access and address disparities. She advocates for disaggregated data usage to prioritize underserved populations, advancing health equity globally. Dr. Ponce serves on several editorial boards notably the Milbank Quarterly, contributing to influential equity, diversity and inclusion discourse in health policy and research. In 2024, she was honored with the CDC Foundation’s Elizabeth Fries Award. Recognizing over two decades of work on data equity, her CHPR team received the 2024 Inclusive Voices Award from the American Association of Public Opinion Research.
Tara Becker, PhD, is a Senior Research Associate at the UCLA Center for Health Policy Research, where she works with the California Health Interview Survey (CHIS), the Data Equity Center, and the Native Hawaiian and Pacific Islander Data Policy Lab. Her work focuses on the measurement of populations that are often hidden or invisible in quantitative data, as well as the differential impact of health policy on underserved and marginalized populations. Dr. Becker received her PhD in sociology, an MS in statistics, and a BS in mathematics and sociology from the University of Wisconsin–Madison.
Riti Shimkhada, PhD, is a senior research scientist at UCLA’s Center for Health Policy Research where she is involved in studies on topics such as health and social disparities, immigrant health, and state-level policies. Her research primarily focuses on disaggregated race and ethnicity data, physical and social environments, and the impact of policies on health outcomes. She is also annually involved in reports examining the cost impact of legislative health mandates and policy actions in California. Dr. Shimkhada received her PhD in Epidemiology from UCLA.
AJ Scheitler, EdD, leads development and engagement at UCLA Center for Health Policy Research, managing programs, notably the Data Equity Center and National Network of Health Surveys. With a background in federal resource development and lobbying for education interests, she also served as Chief of Staff for the Florida Senate Minority Leader. Dr. Scheitler’s research focuses on patient experience and health-education intersections. She holds a doctorate in higher education administration from Northeastern University, a master’s in adult education and training from Colorado State University, and a bachelor’s in communications from the University of Central Florida.
Susan Babey, PhD, co-directs the Chronic Disease Research Program at UCLA’s Center for Health Policy Research and serves as a senior research scientist. Her work, spanning the UCLA Fielding School of Public Health and the Department of Health Policy and Management, focuses on chronic disease prevention and the social drivers of health. Dr. Babey leads studies on health disparities, food insecurity, and access to care for underserved populations. She contributes to projects examining civic engagement’s impact on health, obesity prevention, and prediabetes prevalence in California. Dr. Babey’s expertise extends to advisory roles for state committees and national organizations, emphasizing her commitment to public health advocacy.
