How losing the Patient Safety Network could impact public health

Editor's Note: This is an excerpt from WBUR's weekly health newsletter, CommonHealth. If you like what you read and want it in your inbox, sign up here. 

You might not use the Patient Safety Network website (PSNet for short). But I, for one, sure hope my doctor does. A pair of case studies posted last week help explain why. They’re about migraines. About 12% of Americans get them, including me.

The post, “Not All Headaches are Due to Migraine,” tells the story of two patients initially diagnosed with this severe, sometimes disabling headache. But each had an even more serious condition. That’s the kind of work this government-funded website does. It provides resources for people in medicine to learn from each other’s experiences and mistakes.

The migraine cases may be the last new, potentially life-saving material the website publishes. The day they were posted, the federal government stopped funding updates and maintenance to PSNet, one in a series of recent blows to public health and medical research under the Trump administration. (Just yesterday, the administration announced it is reviewing billions of dollars in contracts and grants to Harvard University, imperiling “life-saving” scientific research, according to Harvard’s president.)

Medical errors are often described as a significant public health threat. One study suggests they are the third-leading cause of death in the country. U.S. Health and Human Service Secretary Robert F. Kennedy Jr. has his own story of a potentially significant misdiagnosis, which Forbes calls ironic given the cut for the website housed within his own agency where such information is posted and discussed.

Dr. Patrick Romano, a former co-editor at PSNet, emailed me with the news of the funding cut. The federal contract Romano and a team at the University of California, Davis received to update and maintain the site ended on March 25 because the Trump administration said it was “shifting priorities.” At the same time, the federal Department of Health and Human Services was preparing to begin layoffs for thousands of staffers.

Kennedy’s office has not responded to questions from WBUR about the funding or how long the site will remain online. The Trump administration had already deleted research on PSNet that it said didn’t align with the President’s priorities or executive orders.

Two Harvard Medical School doctors are suing to reinstate work they were told was removed because it mentioned transgender patients. (One study about risk factors for suicide briefly referenced LGBTQ patients. The other reminded physicians that endometriosis, a condition of the uterus, can occur in transgender males.)

If PSNet is taken down, the doctors and the ACLU say they will consider how the litigation should proceed. They filed a motion this morning demanding the physicians’ work be restored immediately.

“Every day our clients’ articles are not on the website is another day that people are denied access to life-saving information,” said Rachel Davidson, staff attorney at the ACLU of Massachusetts. “If the government is considering removing the website entirely, that will harm patient safety and public health for all people.”

Sign up for the CommonHealth newsletter