Important battles are often fought in obscurity, such as the decision to shutter a 20-year-old online clearinghouse that serves as a convenient, reliable one-stop location for doctors to check out health care best practices.
The Agency for Healthcare Research and Quality (AHRQ), which is part of the federal Health and Human Services Department, said it didn’t have the $1.2 million it costs annually to maintain the National Guideline Clearinghouse (NGC). The Trump administration has targeted AHRQ for spending cuts or even elimination.
The National Guideline Clearinghouse quietly shut down July 16 and its trove of valuable information won’t be archived. The public may never have known except for reporting by Jon Campbell carried by The Daily Beast. Campbell’s story was spotted by Andy Giegerich of the Portland Business Journal, which is how we found out about it.
Giegerich pointed out an Oregon-angle on the story. Valerie King, director of research at OHSU’s Center for Evidence-based Policy, told The Daily Beast the clearinghouse was a “critical go-to source, and there is nothing else like in the world.” King described the clearinghouse as a “singular resource” to support evidence-based health care research.
“Part of what makes NGC unique is its breadth,” King said in her interview. “Drawing on research from all over the country and the world, from professional organizations and research institutes, the site offers a free, and virtually comprehensive, body of guidelines in a centralized and easily searchable location. Rather than seeking out guidelines from dozens of individual publishers, the NGC allows researchers to find the full range of resources in one stop.”
“The OHSU center was established in 2003 to offer head-to-head comparisons of drugs to public and private organizations, as well as consumers,” Giegerich reported. He noted former Governor John Kitzhaber served as leader of the center before his election to a third term.
It’s worth pointing out Campbell is a senior investigator for the Sunlight Foundation’s Web Integrity Project, which defines its mission as “monitoring changes to government websites, holding our government accountable by revealing shifts in public information and access to Web resources, as well as changes in stated positions and priorities.” A major part of its work is “keeping track of data that has been removed during the Trump administration.” This is the group that highlighted the Trump administration’s removal of a 14-page website on Medicaid.com related to the Affordable Care Act.
Some 200,000 people visited the NGC each month prior to its closure, according to the Council of Medical Specialty Societies, which wrote the Trump administration urging it to salvage the online resource:
“Physician members across our specialty societies access NGC’s evidence-based guidelines to provide high-quality, value-based care to their patients. Given the current Administration’s focus on reducing physician burden, it should be recognized that NGC reduces the time that clinicians spend sifting through multiple society websites and peer-reviewed publications.”
Vox, also reporting on the clearinghouse closure, quoted Roy Poses with the Patient-Centered Outcomes Research Institute about the value of vetted health care guidelines as opposed to ones written by or at the behest of drug companies:
“The vetting role played by the NGC is a critical one. Many guidelines are actually written mainly for commercial purposes or public relations purposes. A guideline written for the treatment of depression, for example, may emphasize pharmaceuticals over talk therapy. The organizations writing the guidelines may be getting millions of dollars from big drug companies that want to promote a product. The people writing them may have similar conflicts of interest. NGC’s process provided a resource comparatively free of that kind of influence.”
[Thanks to Andy Giegerich and the Portland Business Journal for discovering this story.]