You might never have heard of Guideline.gov, the online home of the National Guidance Clearinghouse, but Bonnie Jerome-D’Emilia sure had.
She’s a nursing professor at Rutgers University. She used it to help teach her nurse practitioner training programs.
On Tuesday the website was, for all intents and purposes, deleted. Guideline.gov had been the federal government’s online library of the best medical practices, as agreed upon by a consensus of various specialty societies and researchers and vetted by the government. But now it is just a shell.
The Trump administration cited federal budget cuts, at least in part, for the National Guidance Clearinghouse’s (NGC) removal from the public domain.
“The difficult decision to shutter the NGC was made by AHRQ’s [the Agency for Healthcare Research and Quality] leadership in response to our current budget, and the expiration of funding that supported the NGC,” Alison Hunt, a spokesperson for the Agency for Health Research and Quality, which ran the website, said in an email.
That is going to make life a little more difficult for Jerome-D’Emilia and her students at Rutgers.
“The nurse practitioner students must research a clinical problem as their capstone project and a major part of that research required searching the Guideline Clearinghouse,” she told me by email. “We are trying to teach these clinicians to use evidence-based practices, and the loss of this site will make that more difficult.”
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. Jon Campbell, a senior investigator at the Sunlight Foundation’s Web Integrity Project, reported late last week in the Daily Beast that doctors would use the site to prepare insulin treatments for diabetes or look up the best practices for dealing with HIV patients who have unstable housing.
AHRQ, the clearinghouse’s parent agency that Republicans and the Trump administration have targeted for elimination in the past, has seen its budget shrink over most of this decade. Its funding is $120 million lower today than it was in 2010, under spending plans approved by first Republicans in Congress and President Barack Obama and now under Congress and Donald Trump.
There was still $330 million in AHRQ’s budget. Guideline.gov costs $1.2 million to run while continuing to update, or several hundred thousand dollars to simply keep the existing archive up. AHRQ said that “federal rules” had prevented money from being moved from another program area, and Congress apparently hasn’t addressed it in any of their recent spending bills.
Some online wonks had been trying to scrape the site for its current data before it closed, and the agency said it had heard from enthusiastic outsiders who wanted to figure out a way to get the NGC back online. Helen Burstin, who leads the Council of Medical Specialty Societies, said the Trump administration would at least keep offline copies of the guidelines that had been on the website before it was shut down on Tuesday.
I asked readers of VoxCare, our health care newsletter, on Monday if they ever used Guideline.gov in their work. In addition to Jerome-D’Emilia, I heard from Bart Graham. He said he had used the site, which he was familiar with from his work, to advocate (correctly, as it turns out) against an unnecessary surgery:
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Julie Kliger, a former resident nurse and current consultant, also wrote in:
You might recall that Republicans found $1.5 trillion for debt-financed tax cuts. But Congress couldn’t pull together $1.2 million for this website used by professors at nursing schools. It is yet another reminder of the real priorities of the current federal government.