When the Agency for Healthcare Research and Quality (AHRQ) shut down its National Guideline Clearinghouse (NGC) in July, users of the site expressed concern that it was irreplaceable.
The clinical practice guidelines website “was our go-to source, and there is nothing else like it in the world,” Valerie King, MD, MPH, director of research at the Center for Evidence-Based Policy at Oregon Health & Science University (OHSU) in Portland, said in a Daily Beast article written by Jon Campbell, senior investigator at the Sunlight Foundation’s Web Integrity Project. “It is a singular resource.”
At the time of the closure, the quality research institute ECRI, located in Plymouth Meeting, Pennsylvania, said it planned to re-create the site, although it would no longer be free of charge, as it had been under AHRQ.
So what has happened since? The ECRI Institute did launch its site — called the ECRI Guidelines Trust — in mid-November, and for now it is free of charge. “ECRI Institute self-funded the development of the website and we have secured private-sector funding from a non-profit source,” ECRI spokesperson Laurie Menyo said in an email. “We are not yet releasing the details about the funding source, but hope to do that soon. The external funding will permit us to keep the site open for no fee for the foreseeable future.”
The ECRI site currently includes 471 guidelines, compared with the AHRQ website’s 1,300. Of those 471 guidelines, 214 include guideline summaries and a trustworthiness score, called a Transparency and Rigor Using Standards of Trustworthiness (TRUST) Scorecard. So far, the site has 3,000 registered users, Menyo said.
Although ECRI was the contractor that developed and maintained the AHRQ guidelines clearinghouse, ECRI has to develop its own clearinghouse from scratch because AHRQ doesn’t have the copyright permissions needed to give its content to ECRI, according to the agency. “The guideline developers hold the copyright and granted AHRQ permission to post the guidelines on the NGC per agreement with each guideline developer,” an agency spokesperson said in an email to MedPage Today. “That permission is not transferable to another organization or entity, such as ECRI.”
Not having the original AHRQ website has made research more difficult, King, of OHSU, said in an email to MedPage Today. “We pretty much have ended up using a combination of Medline, Google, and targeted professional society and national guideline organizations from other countries to locate guidelines for our research,” she said. “No other databases have proven as strong as our own searching, but it does take up more of our time now.”
For its part, AHRQ has hired MITRE, a non-profit research organization in McLean, Virginia, to “identify new models for disseminating and accessing evidence-based clinical practice guidelines,” the agency announced on its website in July. Although the announcement said the study, which began in August, would be a 12-month project, it is actually expected to finish in Spring 2019, the spokesperson said.
In a blog post for the Web Integrity Project, Campbell noted that AHRQ is spending $400,000 on the MITRE study — the same amount it would take to keep the clearinghouse as a static archive for a year. When asked how AHRQ could afford the study even though it closed the clearinghouse due to a lack of funds, the spokesperson responded, “The annual budget allocation for the [NGC] was $1.2 million. The AHRQ fiscal year 2018 budget did not provide funding to continue the NGC.”
One issue that concerns researchers is the quality of the guidelines. The AHRQ clearinghouse included quality ratings based on standards published in 2011 by the then-Institute of Medicine, now called the National Academy of Medicine (NAM). “With the AHRQ standards, the idea was to check various aspects of the guideline development process to try to assure one could have confidence in it, and that it was valid and unbiased,” Roy Poses, MD, clinical associate professor of internal medicine at Brown University in Providence, Rhode Island, said in a phone interview, speaking for himself.
Poses, who also blogs on conflicts of interest and other matters for the Health Care Renewal website, noted that the academy “was very concerned about management of conflicts of interest that could affect the guidelines. I’m sure it is difficult to implement all the steps; I don’t know whether ECRI has made an effort equivalent to AHRQ’s or not, but I would urge them to consider trying to implement as best they can the [NAM] standards in as much detail as possible.” As of right now, “clearly, what [ECRI has] published for their TRUST Scorecard overview does not have anything like the detail about conflicts of interest that are in the [NAM] standard.”