We had a trusted repository for clinical guidelines – and then it was gone

Manchester; a modern city passionate about football, nightlife and (most recently) Clinical Practice Guidelines. The Mancunians have just pulled off a fascinating annual conference of the Guidelines International Network where hundreds of people came together to discuss advancements in creating trustworthy clinical guidelines and their impact on improving the lives of our populations. I’m currently sitting in the airport prior to leaving Manchester post conference, and as I sit and have some time to reflect it still strikes me as absurd that we no longer have the National Guidelines Clearinghouse (NGC) available to us. In case you are not yet aware, NGC (guideline.gov) was an eminent (if not the preeminent) repository of evidence-based practice guidelines covering all major areas of health and medical care for over 20 years. As of July 16 2018, this “simple-to-use” website has gone off-line due to budget cuts in the United States. This has resulted in thousands of guidelines no longer being able to be easily accessed from a single, searchable repository. We wrote about this recently in an opinion piece here and I wanted to share some further reflections in this blog.

We know there has been a knowledge explosion in recent history. This abundance of information facing health professionals has been described by Sir Muir Gray as the ‘information paradox,’ whereby clinicians are ‘overwhelmed with material of limited relevance and quality but cannot find answers to the many questions that arise when they meet with patients.’(1) It makes sense that one of the best ways to address this explosion is to have trusted summaries and recommendations from this knowledge. Similar to this, Archibald Cochrane once said ‘it is surely a great criticism of our profession that we have not organized a critical summary, by specialty or subspecialty, adapted periodically, of all relevant randomized control trials.’(2) This quote (regarding a repository of randomized controlled trials) was published in a reflection of medical practice in the 1970s with an eye on what medicine might look like in the 2000s. Given the statements of both Gray and Cochrane, it strikes me as dumbfounding and regressive that decisions are being made in 2018 to withdraw funding from such an important and trusted repository for informing practice.

John Rylands Library in Manchester, a very traditional knowledge repository

Payers, health systems, and clinicians all may end up identifying and providing ineffective, low value, expensive, and harmful interventions in the absence of a trustworthy resource for guidelines. We are living in a time where patients are increasingly accessing dubious information online, are not getting evidence-based care and many times are getting interventions that may not have any impact on their clinical outcomes or may even be harmful. I’m worried that the greatest harm of elimination of NGC would be to the patients as this may lead to the proliferation of low-quality guidelines and the provision of poor-quality care.

Our piece received some attention in the media and since its publication there seems to be movements afoot to address the enormous gap left by NGC going dark. We are watching this space with cautious optimism for the future. However, in the here and now, the decision to discontinue funding for the National Guideline Clearinghouse has made access to trustworthy guidelines, and the lives of their end-users, that much harder.

Disclosures: A/Professor Zachary Munn is the director of the Transfer Science program of the Joanna Briggs Institute (JBI) and a systematic review and guideline development methodologist. He is also a current trustee of the G-I-N board. The views in this article are personal and do not reflect the views of any organisations.

If you have any advice, feedback on the blog or information on guideline repositories please send these on or leave a comment.

1. Smith R. The trouble with medical journals. J R Soc Med. 2006;99(3):115-9.

2. Cochrane A. 1931-1971: a critical review, with particular reference to the medical profession. Medicine for the year 2000. London: Office of Health Economics 1979.