Diagnostic and treatment guidelines aren’t sexy, but they play a vital role in the practice of medicine. Physician societies, government agencies, and others issue detailed recommendations for everything from who should receive cardiac stents to which antibiotics patients should get to avoid infections after knee surgery.

These documents are essential for the provision of evidence-based care, as opposed to seat-of-the-pants treatment that might be expedient or lucrative for doctors but less than ideal for patients.

Until now, the most rigorous of those guidelines have been available for doctors to peruse in a single location: the government’s Agency for Healthcare Research and Quality’s National Guidelines Clearinghouse (NGC). NGC also takes the time to summarize the more than 4,000 guidelines it maintains, an indispensible service for the physicians who come to the site seeking information.

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It’s a niche site, but the NGC draws an average of 200,000 visitors per month, according to AHRQ.

After roughly a decade of budget cuts, however, AHRQ has defunded the repository, effective July 16. While the recommendations will still exist elsewhere after that date, anyone hoping to find out, say, how best to treat a teenager with asthma, or who should have a particular test, will have to work harder to locate the most current guidance. The NGC itself will disappear.

“Killing these resources to save a few hundred thousand dollars per year is a penny-wise, pound-foolish decision, and your health and mine will be poorer for it,” said Dr. Kenny Lin, a family physician in Washington, D.C., who is also on the faculty at Georgetown University’s medical school.

In fact, similar repositories do exist, but the NGC’s criteria for inclusion were set by the National Academy of Medicine, which established a high bar for rigor that other clearinghouses might lack. In addition to physicians, other users of the NGC include state and local governments, medical schools and other educational institutions, and health care organizations.

An AHRQ spokesperson acknowledged that “some clinicians and others may initially miss the NGC. But in today’s information-rich environment, they’ll have the ability to find guidelines in other places, such as with organizations that develop guidelines. Likewise, information about guidelines’ trustworthiness will be available from peer-reviewed publications and other sources.”

Others beg to differ. Dr. Roy Poses, a Brown University professor of medicine and president of the Foundation for Integrity and Responsibility in Medicine, said doctors “will be losing an important resource for research, education and evidence-based practice.” (It’s worth noting that some doctors are not fond of the proliferation of guidelines, which they blame for a culture of cookie-cutter care that’s bereft of art and flexibility — and that exposes them to liability if they happen to deviate from doctrine.)

As lamentable as the loss of the NGC would be for doctors and patients, it’s hardly surprising. Its parent agency has been suffering death by 1,000 cuts for years. Despite a modest bump in its 2018 funding, the AHRQ’s $334 million annual budget is $120 million below its 2010 level, adjusted for inflation.

The NGC — whose fiscal year 2017 budget was $1.2 million, down from $2.1 million the year before — didn’t survive the chopping block. “The decision to end support for the NGC was an Agency decision based on assessing how best to use our current resources, including both appropriated dollars and dollars from the Patient-Centered Outcomes Research Trust Fund,” the AHRQ spokesperson told STAT. The AHRQ budget for the 2019 fiscal year, as proposed by the Trump administration, “will re-focus support to only the highest priority research programs.” That doesn’t include the NGC — which is operated by ECRI, a health nonprofit — because it is considered a dissemination contract.

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With the date of death for the NGG barely a month away, America’s doctors — and their patients — may, to paraphrase another clearinghouse, already be losers. Perhaps some physician group would like to ride in like a white knight and provide the funding to keep the NGC alive.

AHRQ “is receiving expressions of interest from stakeholders who may wish to carry on NGC’s work,” according to the AHRQ spokesperson. “If the work continues, we may be able to provide more information in the future, such as listing those potential stakeholders and opportunities for the public to comment.”

If that comes to pass, that funding, to borrow a phrase from politics, should be put in a lockbox.

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  • Dumping this clearinghouse, particularly the guideline summaries expert commentaries and ESPECIALLY the gatekeeper function which helped to keep the NGC’s contents less politically biased and more evidence-based, is POINTLESS. It was absolutely priceless to have a central repository of such guidelines for rapid access in this age of proliferating Internet junk and hucksterism. No, this site was not mainly meant for the general public, but mainly for practitioners and researchers, and as such the quoted NGC pricetag of $1-2 million dollars was dirt cheap IMHO. Especially when you consider that its data often upheld less expensive but proven diagnoses and treatments over newer, more expensive but no more effective protocols. It probably has paid for itself tens to hundreds of times over in saving the public money and lives in this regard. I had already decided the current federal government is crazy and idiotic, but this decision made my jaw hit the floor all over again. Those complete morons.

    ** Furious ***
    – a family medicine pracitioner

  • There are many reputable sites to find information on healthcare reports by medical professionals, universities, hospitals, ect. You can decide if you think the information you are getting is the latest and most scientific just by looking at the source.

  • I suspect few consumers are worried about the closing of guideline.gov. According to Alexa, the numbers of people visiting this site has plummeted; its ranking has dropped by half just in the past year. It’s visitors are primarily of graduate school education, not representative of the population. Even still, its bounce rate has increased and represents nearly half of visitors now, which is an indication of its diminishing value to visitors. This site rarely offers a complete list of guidelines for a given diagnosis. I can usually find more using a search engine.
    Sadly, the mission of AHRQ and HHS has increasingly moved to political agendas and stakeholder interests, and away from the soundest science. Maybe, this is having an impact on their website, too.

  • This is an abysmal development that sets backs efforts to put in one place standards of care across the board of medicine. Trashing this goes with the anti-science/anti-regulatory impetus from the Trump administration. It is a tremendous loss to patients, advocates, doctors, and nurses.

  • And which demographic will be harmed the most? The one that consumes a lot of healthcare services. Older Americans. GOP stands for “Get the Old People”. They are just parasites in our economy and are more a financial liability than source of revenue. The sooner they die off, the better…

  • The sky is not falling. All you need to do is put in the disease + the word “guideline” in your browser…voila!

    • Voila? You want your medical provider to google search your treatment plan? The non-profit government website provided access to the most up-to-date evidence-based practice protocols for practitioners. If you went to this non-biased website, you could be confident that the info you accessed was based on current and peer-reviewed research .

    • Being diabetic a google search offer “cures” for diabetes, medicine free management using supplements they sell, etc. Locally, there is no Real Doctor. Just a nurse practitioner that thinks and AC1 of 8.0 is ‘well controlled”.
      My endocrinologist and the American Diabetes Association, AND the standard of practice for management of diabetes all agree 7.0 to 6.5 is a good management range. A HUGE difference. No, I don’t want to sort through all the garbage on the internet to get FACTS regarding my care. I want a reliable source.

  • With HUGE TAXCUTS for the top 10% & defunding for everything except Dept of Homeland Security & the Defense Dept, when can the estimated lifespan of the Federal govt run out??
    Will most state govts survive a decade longer??
    How soon will the USA revert to the law of the jungle, given that humans in the jungle are among the least healthy in the world…??

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