The Trump Administration is planning to eliminate a vast trove of medical guidelines that for nearly 20 years has been a critical resource for doctors, researchers and others in the medical community.
Maintained by the Agency for Healthcare Research and Quality [AHRQ], part of the Department of Health and Human Services, the database is known as the National Guideline Clearinghouse [NGC], and it’s scheduled to “go dark,” in the words of an official there, on July 16.
Medical guidelines like those compiled by AHRQ aren’t something laypeople spend much time thinking about, but experts like Valerie King, a professor in the Department of Family Medicine and Director of Research at the Center for Evidence-based Policy at Oregon Health & Science University, said the NGC is perhaps the most important repository of evidence-based research available.
“Guideline.gov was our go-to source, and there is nothing else like it in the world,” King said, referring to the URL at which the database is hosted, which the agency says receives about 200,000 visitors per month. “It is a singular resource,” King added.
Medical guidelines are best thought of as cheatsheets for the medical field, compiling the latest research in an easy-to use format. 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.
AHRQ said it’s looking for a partner that can carry on the work of NGC, but that effort hasn’t panned out yet.
“AHRQ agrees that guidelines play an important role in clinical decision making, but hard decisions had to be made about how to use the resources at our disposal,” said AHRQ spokesperson Alison Hunt in an email. The operating budget for the NGC last year was $1.2 million, Hunt said, and reductions in funding forced the agency’s hand.
Not even an archived version of the site will remain, according to an official at AHRQ. A report from the Sunlight Foundation’s Web Integrity Project found the agency announced the site’s retirement, as well as that of a related but less trafficked “Quality Measures” site, this Spring. Some of the NGC’s pages are preserved in a third party archive, but no comprehensive backup of the site’s contents or search functions exists.
Part of what makes NGC unique is its breadth, King explained. Drawing on research from all over the country and the world, from professional organizations and research institutes, the site offers a free, and virtually comprehensive, body of guidelines in a centralized and easily searchable location. Rather than seeking out guidelines from dozens of individual publishers, King said, the NGC allows researchers to find the full range of resources in one stop.
The site plays another critical role, King said: that of gatekeeper. Because medical guidelines are produced by such a vast array of organizations, they vary widely in quality.
“In times past, there were an awful lot of, let me put air quotes around this — ‘guidelines’ — that weren’t of good methodologic quality,” King said. “They were typically just expert opinions, or what we jokingly refer to as BOGSAT guidelines: ‘bunch of guys sitting around a table’ guidelines.”
The NGC has a screening process designed to keep weakly supported research out. It also offers summaries of research and an interactive, searchable interface.