Friday evening, Dr Gordon SchiffThe director of quality and security of the Harvard Medical School, received an email from a colleague informing him that one of his academic documents published on a federal website has been deleted. It understood the words “transgender” and “lgbtq”, which are among the words which are quickly withdrawn from federal websites according to the orders of the Trump administration to end the diversity initiatives, Delete references to the genre and equity of public health equipment and withdraw research documents that promote “gender ideology”.
Schiff’s document, “multiple occasions missed for assessing the risk of suicide” – Available on the Wayback machine – was published in 2022 on the agency for health research and quality Patient safety network website. It was a case study with advice and comments for doctors and he understood this sentence: “High risk groups include male sex, being young, veterans, native tribes, Lesbians, gays, bisexuals, transgender, queer / question (LGBTQ). ”
“We do not even recommend anything here,” explains Schiff, who is also associate director of Brigham and Women’s Center for patient Safety Research and Practice. “We are only reporting risk factors.”
Between Friday and Sunday, nearly 8,000 American government’s websites were withdrawn, Shan Singer reported from the New York Times. ABC News reported Friday That the American Department of Agriculture has ordered its officials to delete the content linked to climate change of public websites. We do not know if the web pages will return online and, in the affirmative, to what extent they will be modified.
Schiff says he is aware of 19 other documents and summaries that have been removed from the AHRQ patient safety network.
“A fat censorship that have already been published, one basically excluding the type of research where the problems are the most frightening and it is dangerous,” explains Schiff, who started his medical residence in 1976 and is in Brigham Since 2007 since 2007. “People ‘lives will be lost.”
Schiff encouraged journalists to continue to hold responsible officials.
“They must expose abuses like this,” he says. “They don’t need to be afraid.”
While journalists continue to report stories about what happens to federal health data, they also need access to data to report stories about health problems in general.
There is no perfect alternative to government databases, but certain non -governmental organizations have their own data sets, which may be useful for journalists. Several journalism associations have also downloaded government data and made them available to their members.
To help journalists in their continuous reports, we have organized a list of non -governmental websites that have health data, although some use government data to create their reports.
We will continue to update this list. If you have a suggestion for a database, please Send us an email.
The resources are listed without any particular order.
The organization of non -profit investigation has several sets of useful data, including the Non -profit explorer Allows you to browse millions of annual income declarations filed by tax -exempt organizations, including non -profit hospitals. Compare nursing home and nursing home inspectingwhich provides the latest CMS data on nursing homes in an easy -to -download format. It is Inspect nursing homes The website is interactive and available by the nursing home, the state or the county. And Dollars for documents Allows users to search for industry payments to doctors, made from August 2013 to December 2018.
Health journalism data from the health care association
The page includes several databases, in particular Hospitalinspiractions.orgwhich lists the inspection reports of the federal hospital; Hospitalfinances.org, which allows you to find financing reports for non -profit hospitals; And State Insurance Guidewhich is created by the University of Georgetown Center on Health Insurance Reformsand has information on the operation of insurance in each state.
KFF (formerly the Kaiser Family Foundation)
KFF is an independent source for research on health policies, polls and news. It produces reports on a range of COVID-19 subjects in HIV / AIDS, Medicaid, Medicare, the Act respecting affordable care and useful resources such as State health facts.
Medicaid state information sheets
Created by the non -profit Commonwealth Fund, the Medicaid information sheets include who and how many people are covered by medical and chip state programs; The importance of Medicaid for health care in Rural America; How many young people depend on Medicaid for access to behavioral health services; And how many federal dollars of Medicaid each state receives.
Health dashboard of the Congress District
The dashboard of the Congress district health provides health measures and its engines at the Congress district, showing how each district focuses on health results, social and economic factors and other measures. The dashboard was created in the health department of the population of NYU Grossman School of Medicine with the support of the Robert Wood Johnson Foundation. The group also manages the City health dashboard.
Institute of health care costs (HCCI)
HCCI, an independent non -profit research organization provides data on health expenses, use and prices for private health insurers. It is widely used to analyze the trends in health care costs and access to commercial insured populations.
Pew is a non -profit non -support organization that conducts public opinion polls, demographic research, content analysis and other research in social sciences. This does not take the policy stations.
Patient centered research institute (PCORI)
Pcori, an independent non -profit research funding organization, maintains research networks and data registers that give access to real world data on patient results. These resources aim to improve the provision of health care by centering patient experiences and preferences.
Institute for health and evaluation metrics (IHME)
Based at Washington University, Ihme is an independent health research organization, with collaborators from around the world. It produces research on a range of subjects, including air pollution, alcohol consumption, COVVI-19, maternal health and vaccine coverage.
County health classification and roadmaps
County Health Rankings & Road Maps is a program of the Population Institute of the University of Washington. It produces annual data on the County health Through the United States, taking into account factors such as premature death, low birth weight, smoking, obesity and sexually transmitted infections.
Data from the Rural Hospital, which are 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 loss of income and the potential job loss for each care provider depending on each policy.
The United Network for Organ Shart (UNOS)
The UNOS is a non -profit organization responsible for maintaining the national transplantation waiting list, to match the donors to the beneficiaries and to supervise organs allocation policies to ensure equity and efficiency. The organization also provides educational resources to patients and professionals and conducts research.
US Collège des Surgeons Nationale Program for Improvement of Surgical Quality (ACS NSQIP)
ACS NSQIP collects data on the surgical results of hospitals and surgical centers. It is used to measure and improve the quality of surgical care, focusing on patient safety and reducing complications. The program also has a quality improvement collection case studies.
National Database Cancer (NCDB)
The NCDB is a joint initiative of the American College of Surgeons and the American Cancer Society. It contains clinical data and results of more than 1,500 accredited cancer programs, covering around 70% of newly diagnosed cancer cases in the United States
Harvard Dataverse is a large repository available publicly with data from Harvard University and around the world, covering a range of subjects ranging from astronomy to health and medicine engineering.
Additional resources
Keep track and use health State Health Department Data and websites.
Journalists and investigative publishersAn organization of non -profit journalism, downloaded more than 120 sets of data from federal websites, also recently in November. Some of these data sets include the system of reports on undesirable events, the behavioral risk factors monitoring system, medical devices reports, multiple death mortality, the national system for monitoring electronic injuries ( Neiss), the national database of practitioners, the database on nuclear materials, the OSHA Workplace Safety data and death file for social security. IRE members can contact the organization and order data sets. The organization has provided data to members since the early 1990s.
This substitution Monitoring of CDC guidelines that have been deleted.
Here are some of the CDC data sets downloaded from Internet archives before January 28, 2025.
On this January 14, 2025, article published in The open notebookIndependent writer and assistant professor Alice Fleerackers Lists several open source databases to help journalists make reports.
Johns Hopkins University has a collection of public health resources.