You might never have heard of the National Guideline Clearinghouse, guideline.gov. To be frank, neither had I. Now it’s gone. After Monday, the Trump administration will shut down guideline.gov, a move it announced in April, blaming budget constraints.
What was the National Guideline Clearinghouse? In short, it was an online database of all the best health care practices from medical societies and other researchers — a one-stop shop for doctors who were trying to figure out the best way to treat their patients and wanted to find out the medical consensus.
As Jon Campbell, a senior investigator at the Sunlight Foundation’s Web Integrity Project, put it in a great story late last week in The Daily Beast:
When doctors want to know when they should start insulin treatments, or how best to manage an HIV patient in unstable housing — even something as mundane as when to start an older patient on a vitamin D supplement — they look for the relevant guidelines. The documents are published by a myriad of professional and other organizations, and NGC has long been considered among the most comprehensive and reliable repositories in the world.
About 200,000 people visited guideline.gov every month, according to the Council of Medical Specialty Societies, which sent the administration a letter in June urging them to find some alternative course to shutting down the website entirely.
There is a lot of medical information floating around — as Ivan Oransky wrote at STAT, some doctors have gotten a bit of sick of the guideline craze because they believe it removes some of the “art and flexibility” from medicine. The value of the clearinghouse was that it put guidelines through a vetting process, allowing doctors to have more faith in their objectivity, and that it put all of them in one place rather than forcing doctors to scrounge through various academic journals and websites.
As CMSS wrote in its letter urging the Trump administration not to shutter guideline.gov without a backup plan:
Physician members across our specialty societies access NGC’s evidence-based guidelines to provide high quality, value-based care to their patients. Given the current Administration’s focus on reducing physician burden, it should be recognized that NGC reduces the time that clinicians spend sifting through multiple society websites and peer-reviewed publications.
There was a benefit to having an unbiased party — the federal government, in this case — collecting this information. That prevented conflicts of interest from getting in the way of good medicine. From the Daily Beast:
The vetting role played by the NGC is a critical one, says Roy Poses, with the Patient-Centered Outcomes Research Institute.
“Many guidelines are actually written mainly for commercial purposes or public relations purposes,” said Poses, and can be subtly shaped to promote a given course of treatment. A guideline written for the treatment of depression, for example, may emphasize pharmaceuticals over talk therapy.
“The organizations writing the guidelines may be getting millions of dollars from big drug companies that want to promote a product. The people writing them may have similar conflicts of interest,” Poses said. NGC’s process provided a resource comparatively free of that kind of influence.
Budget cuts were blamed for guideline.gov being closed. The website was overseen by the Agency for Healthcare Research & Quality, a sub-agency of the Health and Human Services Department.
AHRQ has long been a Republican target — House Republicans and President Trump have proposed eliminating it entirely, though they have never actually acted on that plan. As Oransky wrote at STAT, AHRQ “has been suffering death by 1,000 cuts for years.” It’s lost about $120 million in funding since 2010, adjusted for inflation.
But that still leaves a $330 million budget, and running guideline.gov costs an estimated $1.2 million. For a resource valued by doctors, which seems so useful in making sure American patients can get quality care, could the Trump administration really not find a million dollars?
I posted that question to AHRQ. This is the response I received from Alison Hunt, the agency’s spokesperson:
The difficult decision to shutter the NGC was made by AHRQ’s leadership in response to our current budget, and the expiration of funding that supported the NGC. Likewise, the contract to support the NGC ends this year. Federal rules prohibit redirecting money from another program area.
Hunt also said that intellectual property rules prevent AHRQ from keeping the current guideline.gov online even as a static resource that would no longer be updated.
The administration had said that it received interest from outside groups about maintaining the NGC, but it appears nothing came together to stop the site from shutting down after Monday.
There is some hope. Check out this Twitter thread to see the work people are doing to try to preserve and recreate the clearinghouse. The medical knowledge that had been compiled on guideline.gov has not been erased from the earth, by any means. But it will be harder to find.
This story appears in VoxCare, a newsletter from Vox on the latest twists and turns in America’s health care debate. Sign up to get VoxCare in your inbox along with more health care stats and news.
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