Surveillance Database Losses - From The Elimination of Federal Programs by the Trump Administration
With the Trump administration's elimination of entire injury and violence prevention, and other divisions within the CDC, the public health and safety of the United States faces a significant negative impact. This affects individuals of all ages and groups and includes the disruption of essential data collection systems like the
(Web-based Injury Statistics Query and Reporting System (WISQARS), Behavioral Risk Factor Surveillance System (BRFSS), Youth Risk Behavior Survey (YRBS), National Violent Death Reporting System (NVDRS), etc. The loss of databases, researchers and support staff, funding, and programs will create a critical gap in our ability to understand and prevent the causes and circumstances of injuries and deaths in the United States. Take Action Now!
(Web-based Injury Statistics Query and Reporting System (WISQARS), Behavioral Risk Factor Surveillance System (BRFSS), Youth Risk Behavior Survey (YRBS), National Violent Death Reporting System (NVDRS), etc. The loss of databases, researchers and support staff, funding, and programs will create a critical gap in our ability to understand and prevent the causes and circumstances of injuries and deaths in the United States. Take Action Now!
|
Data Darkness: The Removal of Federal Health Datasets Threatens Public WellbeingOn January 31, 2025, a quiet, yet deeply consequential event took place: several federal government health datasets were taken offline. While some have since been partially restored, their sudden disappearance and incomplete return signal a substantial loss in public health transparency with a troubling impact on understanding of the civic, physical and social health of our society. These datasets—including the CDC’s Behavioral Risk Factor Surveillance System (BRFSS), the Youth Risk Behavior Survey (YRBS), the CDC’s AtlasPlus and HIV surveillance reports, the PEPFAR dashboards, and the USAID-supported Demographic and Health Surveys —are essential tools for researchers, agency and elected officials, journalists, advocates and the development of public policy and programs. Their absence, even if temporary, represents more than a technical hiccup—it marks a profound threat to public health and the public policy support that communities rely on to improve, thrive and survive.
The Circle protests the removal of these datasets and urges their full restoration immediately. For over four decades, BRFSS has been a cornerstone of public health knowledge. It collects state-level data on a wide range of health behaviors, from smoking and obesity to childhood adversity, to access to cancer screenings and vaccinations, and more. Its broad sampling, including in rural and low-population states, ensures that public health strategies can be tailored to local needs rather than applying a one-size-fits-all approach. The temporary removal of this dataset, and the continued absence of its questionnaires and codebooks, disrupts the ability of non-profit and government agencies and public health professionals to monitor trends, detect areas of need or distress, identify deprived populations, and allocate resources effectively. More acutely, BRFSS and YRBS are vital for understanding the health experiences of marginalized populations, including LGBTQ+ individuals. Optional modules in the BRFSS and recent additions to the YRBS collect data on sexual orientation and gender identity—information that has been used to expose stark exposure to risk and harms. For instance, BRFSS has shown that transgender adults are more likely to be uninsured and experience poorer mental and physical health. YRBS data reveals alarming levels of mental health distress among LGBTQ+ teens, and a surge in suicidal ideation among all teenage girls during the pandemic. These insights are not abstract—they are life-saving. Removing access to such data erases visibility into the lived experiences of some of the most vulnerable populations. The impacts of these takedowns extend beyond U.S. borders. The removal of datasets related to HIV/AIDS—such as the CDC’s AtlasPlus and HIV surveillance reports, the PEPFAR dashboards, and the USAID-supported Demographic and Health Surveys—compromises global efforts to combat disease and promote development. These tools are foundational to monitoring progress in international health, understanding demographic trends, and ensuring accountability in foreign aid. Without them, advocacy becomes guesswork, funding becomes less accountable, and program effectiveness becomes harder to measure. Data is not neutral—it provides wisdom and direction. When made publicly available, it allows government and NGO programs and policies to be created and evaluated, journalists to hold systems accountable, researchers to identify deficiencies, and communities to advocate for their needs. When data disappears, even temporarily, public trust erodes, and the most marginalized are silenced. Taking down datasets—particularly without warning or explanation—undermines the very transparency that underpins evidence-based policy. The harm is not hypothetical. Without these datasets, public health officials may miss emerging trends, media outlets may lack the evidence to spotlight crises, and policymakers may lose the tools needed to craft responsive legislation. Most critically, individuals, families and communities—especially those already facing systemic disadvantage—are left in the dark, their needs invisible to the systems meant to serve them. The recent restoration of some datasets is a step forward, but it is not enough. Without full documentation, codebooks, and assurances of stability, these vital public resources remain compromised. In a time when health disparities are widening and misinformation is rampant, accessible, reliable public data is more important than ever. The removal of these datasets, whether intentional or accidental, has already done harm. They provide the foundation for good policy and wise use of resources. Restoring them fully and protecting their future is not just good policy—it is a public health imperative. What Can You Do?We urge you to contact your U.S. Congress representatives to demand the immediate full restoration of the BRFSS datasets. For over four decades, BRFSS has been an essential tool for public health professionals, providing critical data on health behaviors and disparities across diverse populations. Its absence hampers efforts to monitor trends, identify urgent needs, and allocate resources effectively. Protecting access to this vital information ensures that public health strategies remain informed, targeted, and equitable. Please advocate for the reinstatement of these datasets to support the health and well-being of all communities.
Also, Take Action, by contacting the Safe States Advocacy Action Center
|
