The Erosion of Evidence: How Political Shifts Threaten Public Health Data and What It Means for You
For decades, meticulously collected federal data have been the bedrock of public health advancements in the United States. These datasets aren’t just numbers; they’re a vital infrastructure that informs everything from resource allocation to disease prevention strategies. But a quiet revolution is underway, one that’s chipping away at the availability of crucial information – and the consequences could be profound. The stakes are particularly high now, as we navigate an increasingly complex health landscape and strive to address persistent disparities.
A Tale of Two Administrations: Data as a Political Football
The shift in federal data policy has been starkly defined by contrasting approaches. The Biden administration, recognizing the power of data to advance health equity, moved swiftly to bolster data collection and transparency. Revisions to the Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity – the first since 1997 – signaled a commitment to more accurate and inclusive representation. Executive Orders prioritized data-driven accountability for equity, particularly for historically marginalized groups, including the LGBTQ+ community.
However, this progress is facing a significant countercurrent. The second term of the Trump administration has witnessed a systematic dismantling of these efforts. Executive Orders 14148, 14168, and 14151 have collectively targeted diversity, equity, and inclusion (DEI) initiatives, leading to the termination of DEI offices, the cancellation of equity-related grants, and directives to remove content deemed to promote “gender ideology.” The Office of Personnel Management (OPM) was instructed to scrub federal websites of DEI-related materials, a directive partially rolled back due to legal challenges, but indicative of the administration’s intent.
Beyond Policy: The Impact on Data Availability
The policy shifts have translated into tangible changes in data availability. Agencies have removed thousands of publicly available datasets and webpages, though many were restored following legal action. However, the damage isn’t simply about restoration; it’s about alteration. Crucially, sociodemographic variables – particularly those related to race, ethnicity, and sexual orientation and gender identity (SOGI) – are increasingly disappearing from key datasets.
For example, detailed racial and ethnic breakdowns within CDC’s National Center for Health Statistics (NCHS) Data Query System (DQS) have been removed for indicators like infant mortality and heart disease death rates. The National Survey on Drug Use and Health (NSDUH) omitted racial and ethnic data from its 2024 annual report, despite its inclusion in previous years. The OPM’s quarterly workforce reports no longer include a diversity module, and haven’t been updated since September 2024.
The impact on SOGI data is equally concerning. Datasets like the CDC’s heart disease mortality data and the Behavioral Risk Factor Surveillance System (BRFSS) briefly had “gender” variables renamed to “sex.” More significantly, questions about gender identity have been removed from recent BRFSS data, and the Medicare Current Beneficiary Survey has stopped collecting gender identity data altogether. The Health Resources and Services Administration’s (HRSA) Uniform Data System (UDS) has even removed historical SOGI data dating back to 2016.
The Ripple Effect: Why This Matters for Everyone
These changes aren’t merely academic. The erosion of public health data has far-reaching consequences. Without granular data, it becomes increasingly difficult to identify health disparities, track trends among different populations, and allocate resources effectively. This can lead to a widening of existing inequalities and a decline in overall public health.
Consider the implications for maternal health. The future of the Pregnancy Risk Assessment Monitoring System (PRAMS), a “gold standard” dataset for understanding maternal and infant health, is now uncertain due to staffing cuts at HHS. Similarly, the recent firing of the Commissioner of the U.S. Bureau of Labor Statistics (BLS) raises concerns about the objectivity of future economic data, which indirectly impacts health outcomes. Even seemingly unrelated cuts – like the cancellation of USDA surveys measuring food insecurity – contribute to a broader picture of diminished understanding of the factors that influence health.
Looking Ahead: A Future of Data Scarcity?
The trend isn’t likely to reverse course anytime soon. The administration’s proposed budget cuts to the National Institutes of Health (NIH) and the cancellation of climate change research projects at the National Science Foundation (NSF) further signal a prioritization of data reduction over data-driven decision-making. Even the 2025 American Community Survey doesn’t reflect updated OMB guidelines for racial and ethnic data collection, highlighting a systemic resistance to inclusive data practices.
The potential for further data manipulation is also a concern. Suggestions to exclude undocumented immigrants from the 2030 Census, while likely unconstitutional, underscore a willingness to compromise the integrity of fundamental data sources. The message is clear: data is no longer viewed as a neutral tool for understanding and improving public health, but as a potential instrument for advancing a specific political agenda.
What does this mean for the future? It means we’re entering an era of increasing data scarcity, where critical information needed to address pressing health challenges is becoming harder to access. It means that public health professionals, researchers, and policymakers will face greater obstacles in their efforts to protect and improve the health of all Americans. It also means that citizens need to be more vigilant than ever in demanding transparency and accountability from their government.
What are your predictions for the future of public health data? Share your thoughts in the comments below!
