On June 1, 2018, we wrote:
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.
We went on to summarize the importance of this clearinghouse as a reasonably comprehensive source of material about the myriad clinical practice guidelines that have been promulgated ostensibly to improve medical care. Its importance was recently enhanced by the addition of ratings of the trustworthiness of particular guidelines derived from standards developed by the US Institute of Medicine (look here). In turn, these standards were necessary because many published guidelines were afflicted with methodologic problems. Some amounted to little more than informal recommendations of experts. Many guidelines were suspected of being influenced by commercial sponsors or by the financial relationships of the people involved in developing them. Pharmaceutical, biotechnology, device and other firms that market health care goods and services have long been interested in meddling in guideline development to assure that guidelines put their products and services in a favorable light.
We concluded
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.
Again, note that as of June 1, 2018, nothing about the shutdown of the clearinghouse had appeared in the media, or in medical or health care scholarly journals. We hoped maybe the post in our humble blog would start some discussion.
Further Media Coverage
At the time, despite our hopes, experience suggested nothing much would happen. This time, however, we were wrong.
Stat News
The topic was picked up on June 13, 2018 by Stat News. Ivan Oransky and Adam Marcus opened with:
Diagnostic and treatment guidelines aren’t sexy, but they play a vital role in the practice of medicine.
Oransky and Marcus found that the NGC was actually fairly heavily used, drawing 200,000 visitors a month. After further summarizing the issue, they noted the ambiguous official justification for the closure of the clearinghouse.
'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.'
They also excerpted our conclusions above, and lamented,
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.
Daily Beast
One month later (July 12, 2018) the Daily Beast published a longer account of the then impending shut down of the clearinghouse, written by Jon Campbell, an investigator for the Sunlight Foundation. Campbell noted how
medical research like that maintained by the NGC can be politicized, [so] 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.
Note that we had discussed then Representative Price's intervention here.
Campbell interviewed several people, including your humble scribe, about the meaning of the AHRQ's actions, and concluded with
'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.
Other Coverage
Since then, Vox and CNN have covered the issue on July 16, the day of the planned shutdown. The surge of concern about the topic did not apparently prevent it from happening, however.
The New York Times Weighs In
Today, however I was surprised by the lead editorial in the New York Times today about the demise of the NGC, entitled "Want Reliable Medical Information? The Trump Administration Doesn’t." It included this pithy comparison:
The official explanation is maddening enough: a budget shortfall that roughly equals the amount Tom Price spent on travel during his brief tenure as department secretary. The site costs just $1.2 million a year to operate, and is maintained by an agency with a budget of more than $300 million.
It concluded hopefully with:
A better solution would almost certainly be for Congress to appropriate the money needed to keep the database up and running. It could do that simply by renewing the Affordable Care Act fund that was covering the database’s operating costs, and that is scheduled to expire in 2019.
Of course, Congress will take that action only if constituents demand it. But in a country that has voted representatives in and out of office based on their health care policies, and that prides itself on drawing attention to intractable diseases (we dump ice buckets on our heads to raise funds to fight A.L.S., and walk countless miles for breast cancer), evidence-based medicine should be an easy sell.
I am not holding my breath. However, I never thought this issue, perhaps a small on given the huge political dysfunction that grips the country, would make it much farther than my blog post of June 1. So we can hope.
Furthermore, there has been movement towards preserving some of the clearinghouse's functions. As discussed in Modern Healthcare on July 17, 2018, the ECRI Instsitute plans to resurrect the site. It would no longer be free, but will be based on a subscription model which ECRI hopes will keep the costs reasonable. So at least that is real progress since June 1.
Discussion
Many people bemoan the current political situation, but some feel there is nothing they could possibly do the improve things. We have been publishing this blog since 2004 with the hopes that chipping away at the anechoic effect which has hid the severity and nature of health care dysfunction might actually help to improve things. However, at times we wondered if we were having any effect. What good are individual actions like blog posts?
It seems that most of us have little individual power. Collectively, though we may have more than we realize. Small individual actions can add up. I hope the at least partial resurrection of the National Clinical Guidelines Clearinghouse will provide an example that will inspire further individual actions to address health care dysfunction, and the much larger political and economic dysfunction that generate it, and that now threatens us all.
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