The Stealth Shutdown of the US Agency for Healthcare Quality and Research (AHRQ) National Guideline Clearinghouse

The Quiet Announcement of the Shut Down

Apparently as of late April, a terse announcement appeared on the website of the US AHRQ National Guideline Clearinghouse:

The AHRQ National Guideline Clearinghouse (NGC, guideline.gov) Web site will not be available after July 16, 2018 because federal funding through AHRQ will no longer be available to support the NGC as of that date. AHRQ is receiving expressions of interest from stakeholders interested in carrying on NGC's work. It is not clear at this time, however, when or if NGC (or something like NGC) will be online again. In addition, AHRQ has not yet determined whether, or to what extent, the Agency would have an ongoing role if a stakeholder were to continue to operate the NGC. We will continue to post summaries of new and updated evidence-based clinical practice guidelines until July 2, 2018. For any questions, please contact Mary.Nix@ahrq.hhs.gov.

There was no further explanation.

This announcement has been largely anechoic, noted only by a few blogs and websites, e.g. the American Bar Association.

The Importance of the National Guideline Clearinghouse

The shutdown is significant because the Clearinghouse was an important source of information on diverse practice guidelines useful to clinicians, but also to medical and health care educators and researchers.

It is noteworthy that AHRQ has recently endeavored to assure the trustworthiness of the posted guidelines. While guidelines have been long and widely touted as a way to improve the quality of health care, there have been continuing questions about their validity and usefulness. In particular, there was accumulating evidence that many available guidelines were biased by conflicts of interest, based on an incomplete sample of available evidence, and were not necessarily informed by rigorous review of the available evidence, as we discussed here. 

In response, in 2011, the US Institute of Medicine (IOM) published standards for trustworthy guidelines (look here).  These standards were more rigorous and better justified than any prevous attempts to assure guideline quality.

The summary of the IOM report included:

Most guidelines used today suffer from shortcomings in development. Dubious trust in guidelines is the result of many factors, including failure to represent a variety of disciplines in guideline development groups, lack of transparency in how recommendations are derived and rated, and omission of a thorough external review process. To be trustworthy, clinical practice guidelines should:
• Be based on a systematic review of the existing evidence;
• Be developed by a knowledgeable, multidisciplinary panel of experts and representatives from key affected groups;
• Consider important patient subgroups and patient preferences, as appropriate;
• Be based on an explicit and transparent process that minimizes distortions, biases, and conflicts of interest;
• Provide a clear explanation of the logical relationships between alternative care options and health outcomes, and provide ratings of both the quality of evidence and the strength of recommendations; and
• Be reconsidered and revised as appropriate when important new evidence warrants modifications of recommendations.
Additionally, as reflected in the committee’s standards for developing trustworthy clinical practice guidelines, guideline development groups optimally comprise members without conflict of interest. The committee recognizes that in some circumstances, a guideline development group may not be able to perform its work without members who have conflicts of interest—for example, relevant clinical specialists who receive a substantial portion of their incomes from services pertinent to the guideline. Therefore, the committee specifies that members of the guideline development group who have a conflict of interest should not represent more than a minority of the group.

However reasonable these standards may have appeared, by 2012 the IOM standards were largely ignored (as discussed here).

Yet, in 2017, at least one study appeared suggesting that many guidelines in the Clearinghouse did not meet the IOM standards (look here).  That year the AHRQ proclaimed that it would start assessing guidelines' adherence to the IOM standards (look here).

This is noteworthy again considering that the standards have had otherwise unfortunately little impact.

And now it seems the AHRQ's worthwhile effort to disseminate guidelines whose trustworthiness can be assessed will end.

Discussion

So it seems that the report on clinical practice guidelines emphasized two issues highly relevant to Health Care Renewal, the need for transparency in guideline development, and the need to avoid conflicts of interest affecting the development process.

Perhaps more because than despite that, as we noted above, by 2012 the IOM standards were largely ignored (as discussed here).  We speculated that these standards may have discomfited many people.  They could have cost a lot of medical societies considerable commercial funding, and a lot of health care professionals on guideline panels considerable personal wealth.  These standards could probably also have cost a lot of companies whose products and services were addressed by guidelines to lose revenue.  Their implementation could have cost too many people who are financially benefiting from the status quo too much money.  And these people, that is, leaders of professional societies dependent on commercial outside funding, health care professionals and academic used to financial support from commercial interests, and health care corporations are good at making sure their interests are not ignored, even if their interests conflict with those of patients, the public, and well-intentioned health care professionals.


The Trump regime has exhibited great coziness with those who lead large corporations, including health care corporations, and other such plutocrats (look here).  The Trump regime appointed a person who was a manager of commercial information technology firms, not a health care professional or researcher, as head of the AHRQ (look here).  So it should come as no surprise that the AHRQ leadership under that regime was unable to maintain a Guideline Clearinghouse that attempted to uphold such standards of guideline trustworthiness.

Now we will lose an important resource for teaching, research, and evidence-based practice, whose loss will make it easier to hucksters to promote drugs, devices, and programs that are not as efficacious or safe as advertised.  But the good times will continue to roll.

We could call for the reinstatement of the AHRQ National Guideline Clearinghouse.  Ah, but we may as well try and catch the wind.  

We have been writing about health care dysfunction since 2003, and publishing this blog since 2004.  A major concern all along has been how threats to health care professionals' core values generate  health care dysfunction.  Up through 2016, these threats came principally from large private health care organizations.  While the US government was not always as good at defending these values as it could have been, at least it rarely presented its own set of active threats.  Under Trump, that situation has been changing for the worse.  This is obviously hugely dangerous, (and made more so by the regime's threats to other core values of US society, to US law, and the US Constitution.)

To prevent the decline and fall of US health care, and maybe the entire US experiment in representative democracy, health care professionals, academics, patients and citizens concerned about health care will have to join up with the larger populace to defend our core values while they still have any force.  

Musical Interlude - Donovan, Try and Catch the Wind, 1973