Disappearing Data and How Reporters Can Respond
The federal government is diminishing the nation’s capacity to authoritatively measure the health and well-being of Americans in real time. Layoffs have shuttered entire data collection teams in health agencies. For example, the entire group responsible for the only nationwide survey on substance abuse and mental health was fired in April. Dozens of experts at the Centers for Disease Control also were shown the door just as they were wrapping up detailed national surveys on HIV. And the administration shut down the Pregnancy Risk Assessment Monitoring System, a vital source of data on health behaviors before and after childbirth despite an ongoing maternal mortality crisis, especially for Black and Native American women. In some cases, deleted CDC files have been restored due to a court order. In other instances, datasets have been modified to comply with Trump administration mandates such as an Alzheimer’s dataset that was edited to replace the term “gender” with “sex,” part of a broader ideological shift. Combined, these developments threaten the ability of policymakers and health officials to make urgent health policy decisions guided by the best data and evidence available. It also makes it harder for journalists to hold officials accountable for the success or failure of policy decisions as documented in the data. In this webinar, we’ll review the new holes in the federal data landscape and discuss potential strategies for reporters looking to ground stories on a firm foundation of data and facts.
This webinar is free and made possible by the generous support of the Commonwealth Fund and The California Endowment.
Panelists
Jarvis T. Chen, Sc.D., is a research scientist and senior lecturer on social and behavioral sciences at the Harvard T.H. Chan School of Public Health. He is also the associate director of graduate studies in the population health sciences PhD program there. Chen is a social epidemiologist whose research focuses on social inequalities in health, and especially racial/ethnic and socioeconomic disparities in cancer outcomes. His research interests include the development of methods for geospatial and spatiotemporal analysis, disease mapping, handling missing data, and latent variable analysis. Chen was one of the organizers of datathons at Harvard T.H. Chan in January and March that focused on preserving datasets at risk of disappearing.
Julia Lane is a professor emerita at the NYU Wagner Graduate School of Public Service. She was a senior advisor in the Office of the Federal CIO at the White House, supporting the implementation of the Federal Data Strategy. She recently served on the Advisory Committee on Data for Evidence Building and the National AI Research Resources Task Force, the Secretary of Labor’s Workforce Innovation Advisory Committee and the National Science Foundation’s Advisory Committee on Cyberinfrastructure. She currently serves on the advisory boards of the UK Data Service, Te Pūnaha Matatini (New Zealand), BERD@NFDI (Germany), Electronic Privacy Information Center (US), and the National Data Platform (US). Lane is an elected fellow of the National Academy of Public Administration, the American Association for the Advancement of Science, the International Statistical Institute and the American Statistical Association. Lane has founded or co-founded a number of public data infrastructures, including the Census Bureau’s Longitudinal Employer-Household Dynamics program. She is currently working with a number of scientific and statistical agencies on the Democratizing Data project, and published the book “Democratizing Our Data: A Manifesto” with MIT Press in 2020. Lane has authored over 80 scientific publications, edited or coauthored 13 books, and received over $180 million in grants and contracts from national and international agencies and foundations. She holds a PhD in economics and an MA in statistics.
Suggested reading
“Cuts have eliminated more than a dozen US government health-tracking programs,” by Mike Stobbe
“CDC Staffing Upheaval Disrupts HIV Projects and Wastes Money, Researchers Say,” by Amy Maxmen, KFF Health News
“US government fired researchers running a crucial drug use survey,” by Grace Wade, New Scientist
“Cuts have eliminated more than a dozen US government health-tracking programs,” by Mike Stobbe, The Associated Press.
“Trump administration’s data deletions set off ‘a mad scramble,’ researcher says,” by Mike Stobbe, The Associated Press
“Trump’s War on Measurement Means Losing Data on Drug Use, Maternal Mortality, Climate Change and More,” by Alec MacGillis, ProPublica
“‘Data Silence’ Holds High Stakes for People’s Health, via The Commonwealth Fund
“A Look at Federal Health Data Taken Offline,” via KFF
“Researchers rush to preserve federal health databases before they disappear from government websites,” by Naseem S. Miller, The Journalist’s Resource