Experts say the database of carefully curated medical guidelines is one of a kind, used constantly by medical professionals, and on July 16 will ‘go dark’ due to budget cuts.
07.12.18 5:11 AM ET
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Not even an archived version of the site will remain, according to an official at AHRQ.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.
That gatekeeping role has sometimes made AHRQ a target. The agency was nearly eliminated shortly after its establishment, in the mid-90s, when it endorsed non-surgical interventions for back pain, a position that angered the North American Spine Society, a trade group representing spine surgeons. A subsequent campaign led to significant funding losses for AHRQ, and since then, the agency as a whole has been a perennial target for Republicans who have argued that its work is duplicated at other federal agencies.
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.
Underscoring how medical research like that maintained by the NGC can be politicized, AHRQ drew the ire of then-congressmember Tom Price in 2016 when it published a study critical of a drug manufactured by one of his campaign donors. According to ProPublica, one of Price’s aides emailed “at least half a dozen times” asking the agency to pull the critical research down. Price was the first director of HHS, AHRQ’s parent agency, under the Trump Administration, before resigning under pressure last year over his spending on chartered flights.
The current director of AHRQ, Gopal Khanna — a Price appointee — is the first non-scientist to head the agency. His résumé includes mostly positions in information technology management, in state government in Minnesota and Illinois, and a brief stint in the George W. Bush White House. Shortly after he was hired in 2017, he announced that data dissemination as one of his central priorities at the agency.
Mary Nix, Deputy Director of the Division of Practice Improvement at the Center for Evidence and Practice Improvement within AHRQ, cited budget cuts as the driving force behind NGC’s retirement. The site was most recently supported by a fee on some health insurance plans, which was instituted as part of the Affordable Care Act but is set to sunset in 2019. Nix estimates that the site would cost a “few hundred thousand” dollars per year to maintain even as a static archive.
Nix has been helping coordinate an effort to get some outside stakeholder to take over the site’s operations. She said she’s still hopeful, and even days before the site’s scheduled demise, AHRQ spokesperson Hunt told the Daily Beast that the search continued.
“Losing [the NGC] is really losing a valuable resource,” said Ana Maria Lopez, President of the American College of Physicians. She said the NGC is a primary source for her organization’s research, and noted that digital repositories like the NGC are only more critical today. “We’ll be thinking through what role we might be able to play here in helping to protect access to scientific information.”