In 2017, the website was given $1.2 million in funding
About 200,000 people visit the site each month, mostly doctors
After Monday, the website for the National Guideline Clearinghouse, which provides access to guidelines for practicing medicine, will no longer be available to its users – mostly doctors – due to a lack of funding, according to an announcement posted on the site in April.
No stranger to financial uncertainty over its 20-year history, the clearinghouse is an initiative of the Agency for Healthcare Research and Quality of the US Department of Health and Human Services, which earmarked $1.2 million to fund the site in 2017.
While some bemoan its demise, the website may soon be rescued, according to the agency, which noted in its announcement that it has received some interest from unnamed stakeholders wanting to carry on the work.
However, it is not clear when or whether the national clearinghouse (or something resembling it) will go live again, the agency warned.
‘Important for providers’
The website receives about 200,000 visits each month, according to Alison Hunt, a spokeswoman for the agency, though the number of separate users each month is unclear.
Generally, doctors and other providers visit the site while searching for medical guidelines, which usually include specific recommendations to help health care providers make decisions about the appropriate care for patients with a diagnosed condition. Essentially, clinical practice guidelines are best practices for the treatment of known medical conditions – asthma, say, or diabetes.
The National Guideline Clearinghouse, tasked with providing “an accessible mechanism,” was created in 1998 by the Agency for Healthcare Research and Quality in partnership with the American Medical Association and the American Association of Health Plans (now called America’s Health Insurance Plans).
“We believe it is important for providers to have access to evidence-based guidelines when they need them, which is why (as you mentioned) health insurance providers were an early supporter and sponsor of this project,” said Cathryn Donaldson, a spokeswoman for America’s Health Insurance Plans.
The American Medical Association declined to comment for this report.
“Funding support from those partners ended in 2002,” Hunt said.
Between 2002 and 2015, the Agency for Healthcare Research and Quality funded the clearinghouse with money earmarked for “Dissemination and Translation activities,” past budget reports indicate. Yet this particular line item saw a decrease of $5.6 million over the previous year in the 2015 President’s budget.
Given these “budget constraints,” Hunt said, funding for the clearinghouse shifted to the Patient-Centered Outcomes Research Trust Fund, created under the Affordable Care Act to help build infrastructure for conducting medical research to contribute to evidence-based approach in medicine.
Yet the trust fund is set to expire next year, so the Agency for Healthcare Research and Quality leadership made the “difficult decision to shutter the National Guideline Clearinghouse,” Hunt wrote in an email.
“We are exploring options to sustain the [clearinghouse] and will share more information when it becomes available,” she added.
“Clinicians and others who use the National Guideline Clearinghouse can find guidelines in other places, such as with organizations that develop guidelines, medical specialty societies, health networks and others,” Hunt said. “For example, the US Preventive Services Task Force provides recommendations on clinical preventive services, such as screenings, in preventive care.”
There are no surveys indicating whether health care providers turn to the clearinghouse rather than their medical specialty societies when searching for guideline assistance.
Dr. Michael Munger, president of the American Academy of Family Physicians, sees the clearinghouse as a go-to site where users can find comprehensive guidelines that are free of charge while meeting stringent inclusion criteria.
‘Really nice features’
What’s “unique” about the clearinghouse is that it “puts all the specialties together,” Munger said.
“It’s a spot where you can go to have all of the guidelines in one site or many of the guidelines in one site,” he said.
“You can browse by specialty; you can browse by what the organization was that was contributing; all of those are really nice features to be able to utilize,” he said. The clearinghouse also provides summaries of many of the guidelines for health care professionals in need of easily digestible information. At the date of its closing, it offered 1,416 guideline summaries.
Although Munger himself has used the resource, he said he doesn’t know how commonly it is used by others. “You’re going to have to be trying to search to find [the guidelines], as opposed to being able to go to one spot,” he said.
In an article in 2011, a committee of the Institute of Medicine said that the National Guideline Clearinghouse “is a highly useful guideline dissemination tool. … However, the [clearinghouse’s] contribution may be of questionable value when listing guidelines [provide] too little information for an informed reader to judge quality and trustworthiness.”
At that time, the institute, which declined to comment for this report, recommended that the clearinghouse eliminate guidelines “for which trustworthiness cannot be determined, and identify the trustworthiness of those retained.”
In June 2014, the clearinghouse adopted more stringent standards for accepting guidelines, as suggested by the Institute.
However, in a study published in 2017, researchers who “evaluated the trustworthiness” of practice guidelines on the clearinghouse for child and youth anxiety and depression still found the quality of the national clearinghouse to be “variable.”
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“At present, National Guideline Clearinghouse users without the time and special skills required to evaluate practice guideline quality may unknowingly choose flawed practice guidelines to guide decisions about child and youth anxiety and depression,” the authors wrote.
Hunt said that “the decision to shutter the National Guideline Clearinghouse was not based in any part on the study.”
Imperfect though it may be, some champion the clearinghouse and wish to see it continue. Munger said. “It’s really been a good resource for family physicians, and we would like to see it move forward.”