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 & Quality] leadership in response to our current budget, and the expiration of funding that supported the NGC,” Alison Hunt, a spokesperson for AHRQ, 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 at 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 its 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.
AHRQ will maintain NGC DATA, but sadly not website. We will keep working at it! https://t.co/z5POJp6g9Q— Helen Burstin (@HelenBurstin) July 15, 2018
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:
While I am a licensed Social Worker, I used to work for the American Board of Internal Medicine which is the largest of the 24 specialty boards. I was the Managing Director of Clinical Analytics and I used guideline.gov as a primary source in the work I did assessing physician performance against guidelines.
Additionally, I have used it as a patient (I have advised everyone to be familiar with this site and how it works). It has truly been indispensable for my personal health when I was having repeated attacks of diverticulitis. With the help of the guidelines I found (and I know how to use them), I was able to advocate for myself against bowel resection surgery because of the evidence I found at the site. Indeed, as the evidence suggested, the diverticulitis did calm down on its own (for my particular set of circumstances) saving tons of money and grief (and lots of pain).
From my perspective, both as a clinician and as a patient, I found the information on guideline.gov truly of critical importance. Without this site, clinicians and patients will be required to reach out to each of the medical societies (who are the primary publisher of the guidelines) for current and up to date research and suggested treatments. Additionally, guideline.gov had other guideline publishers so one could have a more comprehensive view than only one guideline.
Julie Kliger, a former resident nurse and current consultant, also wrote in:
While not an MD, I am an RN and a healthcare consultant and past executive. I often am in the position of policy-setting and developing practice guidelines with my colleagues. This resource is a ‘no-brainer’ and the fact that this is being taken ‘dark,’ is another attempt to pull science, reasoning, evidence and fact from medicine.
In many aspects of Healthcare practice and policy, I am seeing a “bending away” from evidence in this Administration for (probably) many reasons.
The push to promote baby formula over breastfeeding, is yet another recent example of “alternative priorities” that favor industry profit over public health.
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.