Doctors say they’re cautious about the accuracy of health information that’s now returning to federal government websites after a judge ordered federal health agencies to restore treatment guidelines, data sets, and other information abruptly removed last month.
Concerns remain about whether the restored information will be censored, incomplete, or outdated, said Ada D. Stewart, MD, a family physician and HIV specialist who practices at the Eau Claire Cooperative Health Centers in Columbia, South Carolina.
Some Centers for Disease Control and Prevention (CDC) analyses and data on influenza, including bird flu, remain incomplete, scientists have found.
Some sites, such as one covering HIV testing, display restored information but with a disclaimer that notes the restoration was court-ordered:
“Any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female. The Trump Administration rejects gender ideology … This page does not reflect biological reality and therefore the Administration and this Department rejects it.”
“There’s some skepticism there,” Stewart told Medscape. “Is this still going to be reliable information? Has the data been manipulated? We now have these questions. Is this real data that we need to care for our patients?”
Federal Website Changes Alarm Doctors, Researchers
In January, the CDC, US Department of Health & Human Services, and other federal agencies removed information on their websites relating to health and gender equity, sexual orientation, HIV, and contraception, among other topics.
Officials edited the sites in response to executive orders by the Trump administration in January requiring the removal of references to diversity, equity, and inclusion and gender-affirming care.
Guidance on sexually transmitted infection treatment, vaccination during pregnancy, and contraceptive options for patients with medical complications were removed, among other information.
The advocacy group Doctors For America (DFA) promptly sued to stop the purge, alleging it violated federal law and that physicians were being harmed by lack of access to medical information.
On Jan 11, a federal judge granted the group a temporary restraining order, ordering the federal health agencies to restore the information and datasets.
The US Office of Personnel Management (OPM), a defendant in the case, did not respond to Medscape’s request for comment.
US District Judge John D. Bates in his order wrote that “the balance of equities and the public interest” strongly favor DFA and that the group demonstrated the widespread disruption that abrupt removal of these “critical healthcare materials has caused.”
DFA board member Reshma Ramachandran, MD, said in a statement that the victory “recognizes just how important these webpages are for us as physicians and researchers as we work to care for patients and improve public health.”
In court records, OPM argued that the doctor’s group had not demonstrated irreparable injury. The government also countered that much of the information in dispute remains available through archival copies hosted by the Wayback Machine, as referenced by DFA itself in legal documents.
Joseph Cherabie, MD, medical director for the St. Louis STI/HIV Prevention Training Center at WashU Medicine, Saint Louis, said the restraining order was encouraging, but he’s concerned the restored data may still exclude historically neglected populations, such as transgender and gender-diverse people.
Physicians will “have to see how this plays out,” Cherabie said of the court decision. “I hope we get the data back and that it’s real-time data. I hope we get data back that’s not redacted in any way and lets us best care for our patients according to evidence-based medicine.”
Since the data removal, Cherabie noted that various professionals and organizations have made efforts to archive the lost guidance and data. Physicians on Bluesky for example, are sharing archived data and helpful websites through handles such as #IDsky and #HIVsky. Archivists and researchers on Reddit are also operating data rescue efforts to preserve missing government data.
Even when the federal data returns, Cherabie plans to keep checking the other archived sites and sources for confirmation and comparison.
“I can’t begin to describe the community effort of people, especially Bluesky, who have helped to make sure that certain things are archived [and that] we can find other alternative sites,” he said. “There’s a bunch of people doing work behind the scenes, and it’s very good work.”
Maya Maxym, MD, a Hawaii-based pediatrician who has been vocal about the issue on Bluesky, also said she’ll continue to check datasets outside the federal agency sites.
“I will continue to be cautious since things are changing rapidly and unpredictably,” she said in an interview with Medscape. “It is often my practice to cross-check recommendations across two or more reliable sources. [For example,] society recommendations, [and] Cochrane reviews, so I will continue to do that.”
Stewart believes it’s always a good idea for physicians to turn to their respective professional associations for published guidelines and other clinical data when making practice decisions. Stewart, president for the South Carolina Academy of Family Physicians, has also been directing patients to such association websites for more information about medical issues.
“There’s not only confusion within our physician or medical communities, but now we have our patients also asking questions,” she said. “We have to educate our patients.”
Much of the data and research initially removed from the agency websites can still be accessed through The Wayback Machine, operated by the nonprofit digital library Internet Archive, and the End of Term web archive, which preserves existing pages from prior administrations and is housed at the Internet Archive and the Library of Congress.
Medscape Medical News has also created a preliminary list of alternative sources for health data and practice guidelines and will update it as more information becomes available.