Federal health data is at the heart of a wealth of public health research, programs and decisions. But access to is in danger.
Photo by AndreyPopov, courtesy iStockphoto
The National Center for Health Statistics is the nation's leading source of health data on everything from environmental exposures to vaccination status to heart disease mortality. But firings and confusion under the Trump administration threaten to hamstring its work and cut off the flow of data, harming the nation's ability to understand its own health.
The problem, brought on by Trump administration decisions, extends well beyond NCHS, with all federal data relevant to public health at risk, said Janet Rosenbaum, PhD, assistant professor at SUNY Downstate Health Sciences University School of Public Health.
Much of federal data collection operates out of public view, which means disruptions in the system can go largely unnoticed, Rosenbaum warned during APHA's 2025 Annual Meeting and Expo in November. Federal data is typically not public until one to two years after it is gathered, leaving critical gaps in oversight.
Another known example of disappearing data is information from the National Center for Education Statistics, the federal government's premier source for education data. Amid the Trump administration's dismantling of the Department of Education, the center's Early-Childhood Longitudinal Studies — which collect data on everything from classroom size and teacher backgrounds to student home life, mental health and diet — were halted. Before the cuts, researchers had gathered data from kindergarten cohorts entering in 2023 and 2024.
That kindergarten data has yet to be released and the planned first grade data collection was canceled. No indication shows the agency will reach its original data collection milestone of following the cohort through third grade. That means data — such as how many kindergarteners live in poverty or trends in loneliness and sadness among elementary school students — could be lost.
“These longitudinal data sets are particularly valuable because they're very expensive to collect, but they give us some really important information about points of intervention,” Rosenbaum told The Nation's Health.
Health workers use federal data to craft interventions. But recent Trump administration actions have undermined data collection.
Photo by DMP, courtesy iStockphoto
Without steady, long-term data, tracking critical health indicators becomes far more difficult — and it becomes easier for critics to dismiss or distort the urgency of problems that reliable numbers would expose.
On top of fears that key datasets could disappear altogether, experts warn that specific surveys may be deliberately targeted to mask the fallout of recent policy decisions.
In September, the U.S. Department of Agriculture announced it was ending its Food Insecurity Survey, which had provided annual data on hunger trends and guided policymakers in crafting strategies to address food insecurity. Before it was canceled, the survey had collected data for 30 years. The most recent findings, released in 2024, found that 1 in 7 households were food insecure and that the rate was growing.
The survey cancelation came after Congress and the Trump administration adopted federal budget legislation that sharply cuts funding for public assistance programs, including food assistance. Experts warn food insecurity will surge once the cuts take full effect — which some suggest may have been a motivator to end the survey.
“They don't want to put out numbers that say that,” Kyle Ross, a policy analyst at the Center for American Progress, told The Nation's Health Podcast.
Besides cutting off data altogether, there are also concerns that data may be changed or misrepresented. The Trump administration has previously altered federal data to align with its political stances. In a review of more than 200 federal datasets modified over three months last year by administration officials, nearly half were substantially changed, according to a July study in The Lancet. In most cases, references to “gender” were replaced with “sex,” keeping in line with the Trump administration's stance on gender identity.
“Because some respondents will answer questions about gender differently from questions about sex, changing these terms changes the accuracy of the dataset and the conclusions that can be drawn,” the researchers said.
NCHS suffers brain drain in wake of cuts
When data appears politically influenced, it undermines confidence and trust in who to turn to for reliable information, said Denys Lau, PhD, editor-in-chief of APHA's American Journal of Public Health. Lau previously served as a senior scientific advisor in NCHS' Division of Health and Nutrition Examination Surveys before assuming the helm of the journal in July.
NCHS, a unit of the Centers for Disease Control and Prevention, is tasked with collecting data on the health of the U.S. population — from birth and death records gathered through the National Vital Statistics System to health status findings from the National Health Interview Survey. The agency conducts the National Health and Nutrition Examination Survey to measure the nation's well-being and the National Health Care Survey to identify who is receiving care and how.
Public health workers nationwide rely on NCHS data to identify and monitor health problems, track risk factors and evaluate the impact of programs and policies. The information guides decisions on issues ranging from harm reduction to food insecurity.
But as the Trump administration haphazardly hacked away at the U.S. Department of Health and Human Services last year — firing and then rehiring some workers, cutting and then restoring some programs, sometimes in the same week —many highly qualified workers who collect, interpret and share U.S. data on health left, according to Lau.
“A lot of folks are now trying to pick up their work duties, and they also don't have the next generation of scientists coming into the federal government,” Lau told The Nation's Health.
During the federal government shutdown in October, the Trump administration laid off nearly 1,800 more HHS employees.
Included in the layoffs were behavioral scientists and mathematical statisticians in NCHS' Division of Research and Methodology. Their roles are critical for evaluating survey questions and ensuring data accuracy, particularly for diverse populations.
The loss could mean new content would not be properly tested, weakening the quality of survey questions and data collection, Jennifer Schoendorf, PhD, senior deputy editor of AJPH, told The Nation's Health.
“There's this sense that you don't need internal researchers,” said Schoendorf, who spent nearly 30 years at NCHS, most recently as director of the Division of Research and Methodology.
While some of NCHS' fired staff were rehired, at least through Jan. 30, their long-term fate was uncertain at press time.
“Academics are really interested in getting the next best scientific paper out there, but the research statisticians and behavioral scientists are really interested in is how we can do that research and make our NCHS surveys better,” she told The Nation's Health.
For many federal workers who gathered, analyzed and released public data, trust in the government may never fully return. That could lead them to permanently leave the governmental workforce.
“The experts that aren't there anymore have tremendous abilities and expertise,” Rosenbaum said. “I think the question (is) whether we can convince them to trust the government enough to work again.”
For more information, visit www.cdc.gov/nchs.
- Copyright The Nation’s Health, American Public Health Association
