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. 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 Chen is a social epidemiologist and senior lecturer on social and behavioral sciences at the Harvard T.H. Chan School of Public Health. His research focuses on structural inequities and health, with a special interest on racialized and socioeconomic disparities. He has an abiding interest in the role of responsible data stewardship in informing public health practice, evidence-based policy making, and accountability of social institutions to the public good. 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 public data infrastructures. She is currently working on the Democratizing Data project, and published the book “Democratizing Our Data: A Manifesto” with MIT Press in 2020.
Angeliki Kastanis is data editor at The Associated Press, where they oversee a team of data reporters who acquire, vet and crunch numbers as part of the AP Data Team to uncover compelling, hard-hitting stories. Their work — some of which has garnered national awards for investigative reporting and led to lasting policy change — includes reporting on modern-day redlining, the lack of legal protections for transgender workers, and the demographics of frontline workers during the pandemic. They previously worked as a data analyst at the Williams Institute-UCLA School of Law, a research center focusing on sexual orientation and gender identity law and public policy. Angeliki has a master of public policy from The University of Chicago and a B.A. from Columbia College Chicago. Their data strong points are working with Census data, demographics and geographies.
J. Emory Parker is the data editor at STAT. He joined STAT in 2021 after working as a digital editor and data journalist in Charleston, S.C. In 2015, he was part of the team that won the Pulitzer Prize for Public Service for a series on South Carolina’s epidemic of criminal domestic violence. Prior to working in journalism, he worked in a neuroscience lab at the Medical University of South Carolina. Emory received a degree in biology from the College of Charleston.
Suggested reading
“STAT is backing up and monitoring CDC data in real time: See what’s changing,” by J. Emory Parker, STAT
“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
“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