On Friday night, Dr. Gordon Schiff, the quality and safety director at the Harvard Medical School, received an email from a colleague informing him that one of his academic papers published on a federal website was taken down. It included the words “transgender” and “LGBTQ,” which are among the words that are being removed quickly from federal websites following the Trump administration’s orders to stop diversity initiatives, remove references to gender and equity from public health material and withdraw research papers that promote “gender ideology.”
Schiff’s paper, “Multiple Missed Opportunities for Suicide Risk Assessment” — available on the Wayback Machine — was published in 2022 on the Agency for Healthcare Research and Quality’s Patient Safety Network website. It was a case study with advice and commentary for physicians and it included this sentence: “High-risk groups include male sex, being young, veterans, Indigenous tribes, lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ).”
“We weren’t even advocating anything here,” says Schiff, who is also the associate director of Brigham and Women’s Center for Patient Safety Research and Practice. “We were just reporting what the risk factors were.”
Between Friday and Sunday, nearly 8,000 U.S. government websites were taken down, reported Ethan Singer of The New York Times. ABC News reported on Friday that the U.S. Department of Agriculture has directed its officials to remove content related to climate change from public websites. It’s unclear whether the web pages will come back online, and if so, to what extent they will be modified.
Schiff says he’s aware of 19 other papers and summaries that were removed from AHRQ’s Patient Safety Network.
“A wholesale censoring of things that have already been published, a wholesale precluding of the kind of research where the problems are the greatest is chilling and it’s dangerous,” says Schiff, who began his medical residency in 1976 and has been at the Brigham since 2007. “People’s lives are going to be lost.”
Schiff encouraged journalists to continue holding public officials accountable.
“They need to be exposing abuses like this,” he says. “They need to be not afraid.”
While journalists continue to report stories about what’s happening to federal health data, they also need access to data to report stories about health issues in general.
There’s no perfect alternative to the government databases, but some non-governmental organizations have their own datasets, which can be useful to journalists. Several journalism associations have also been downloading government data and making them available to their members.
To help journalists with their continued reporting, we have curated a list of non-government websites that have health data, although some use government data to create their reports.
We’ll continue to update this list. If you have a suggestion for a database, please email us.
The resources are listed in no particular order.
The nonprofit investigative news organization has several helpful datasets, including the Nonprofit Explorer allows you to browse millions of annual tax returns filed by tax-exempt organizations, including nonprofit hospitals. Nursing Home Compare and Nursing Home Inspect, which provides the latest CMS data on nursing homes in an easy-to-download format. Its Nursing Home Inspect website is interactive and searchable by nursing home, state or county. And Dollars for Docs allows users to search for industry payments to doctors, made from August 2013 to December 2018.
Association of Health Care Journalists’ Health Journalism Data
The page includes several databases including hospitalinspections.org, which lists federal hospital inspection reports; hospitalfinances.org, which allows you to find nonprofit hospitals’ finance reports; and State Insurance Guide, which is created by the Georgetown University’s Center on Health Insurance Reforms, and has information on how insurance works in each state.
KFF (formerly the Kaiser Family Foundation)
KFF is an independent source for health policy research, polling and news. It produces reports on a range of topics from COVID-19 to HIV/AIDS, Medicaid, Medicare, the Affordable Care Act and useful resources such as State Health Facts.
Created by the nonprofit Commonwealth Fund, the Medicaid fact sheets include who and how many people are covered by state Medicaid and CHIP programs; Medicaid’s importance to health care in rural America; how many young people depend on Medicaid for access to behavioral health services; and how many federal Medicaid dollars each state receives.
Congressional District Health Dashboard
Congressional District Health Dashboard provides measures of health and its drivers at the congressional district level, showing how each district is doing on health outcomes, social and economic factors and other measures. The Dashboard was created at the Department of Population Health at NYU Grossman School of Medicine with the support of the Robert Wood Johnson Foundation. The group also manages the City Health Dashboard.
Health Care Cost Institute (HCCI)
HCCI, an independent nonprofit research organization, provides data on health care spending, use and pricing from private health insurers. It is widely used to analyze trends in healthcare costs and access for commercially insured populations.
Pew is a nonprofit, nonpartisan organization that conducts public opinion polls, demographic research, content analysis and other social science research. It does not take policy positions.
Patient-Centered Outcomes Research Institute (PCORI)
PCORI, an independent, nonprofit research funding organization, maintains research networks and data registries that provide access to real-world data on patient outcomes. These resources aim to improve health care delivery by centering on patient experiences and preferences.
Institute for Health Metrics and Evaluation (IHME)
Based at the University of Washington, IHME is an independent health research organization, with collaborators around the world. It produces research on a range of topics, including air pollution, alcohol use, COVID-19, maternal health and vaccine coverage.
County Health Rankings & Roadmaps
County Health Rankings & Roadmaps is a program of the University of Washington Population Health Institute. It produces annual data on the health of counties across the U.S., taking into account factors like premature death, low birthweight, adult smoking, obesity and sexually transmitted infections.
Rural Hospital Data, part of the National Rural Health Association, provides state reports on the impact of federal policies on health care providers and patients. The data shows the annual revenue loss and potential job loss for each care provider based on each policy.
The United Network for Organ Sharing (UNOS)
UNOS is a nonprofit organization responsible for maintaining the national transplant waiting list, matching donors to recipients and overseeing organ allocation policies to ensure fairness and efficiency. The organization also provides educational resources for patients and professionals and conducts research.
American College of Surgeons National Surgical Quality Improvement Program (ACS NSQIP)
ACS NSQIP collects data on surgical outcomes from hospitals and surgical centers. It’s used to measure and improve the quality of surgical care, focusing on patient safety and reducing complications. The program also has a collection of quality improvement case studies.
National Cancer Database (NCDB)
The NCDB is a joint initiative of the American College of Surgeons and the American Cancer Society. It contains clinical and outcomes data from more than 1,500 accredited cancer programs, covering approximately 70% of newly diagnosed cancer cases in the U.S.
Harvard Dataverse is a large publicly-available repository of data from researchers at Harvard University and around the world, covering a range of topics from astronomy to engineering to health and medicine.
Additional resources
Keep track and make use of health state health department data and websites.
Investigative Reporters & Editors, a nonprofit journalism organization, has downloaded more than 120 data sets from the federal websites, as recently as November. Some of those data sets include Adverse Event Reporting System, Behavioral Risk Factor Surveillance System, Medical Device Reports, Mortality Multiple Cause-of-Death Database, National Electronic Injury Surveillance System (NEISS), National Practitioner Databank, Nuclear Materials Events Database, OSHA Workplace Safety Data and Social Security Administration Death Master File. IRE members can contact the organization and order the data sets. The organization has been providing data to members since the early 1990s.
This Substack is keeping track of CDC guidelines that have been removed.
Here are some of the CDC datasets uploaded to the Internet Archive before January 28th, 2025.
In this January 14, 2025, article published in The Open Notebook, freelance writer and assistant professor Alice Fleerackers lists several open-source databases to help journalists with their reporting.
Johns Hopkins University has a collection of public health resources.
Expert Commentary