Trump Administration Shutters Key Health Research Website

For 20 years, the federal government has been giving the medical community a place to develop, store and share clinical guidelines. As private payers gathered up more data with advanced algorithms to make determinations in delivering care, the medical community needed all the help it could get.

But the Trump administration has decided to get the feds out of the way.

On July 16, 2018, the administration closed the National Guideline Clearinghouse (NGC), a website that is part of the Agency for Healthcare Research and Quality (AHRQ). The site offered clinical guidelines about medical conditions and saw more than 200,000 visitors per month.

The administration, which has proposed shutting down the agency altogether, cited budget concerns.

“The difficult decision to shutter the NGC was made by AHRQ’s leadership in response to our current budget, and the expiration of funding that supported the NGC,” Alison Hunt, AHRQ spokesperson, told FierceHealthcare.

Hunt said AHRQ will keep a backup of the data previously housed in the NGC and is “exploring options” to sustain the clearinghouse.

“Astonishing and Unconscionable” – Gawande

The response from industry and academia leaders was quick.

Atul Gawande, M.D., who is now heading Amazon, JPMorgan Chase and Berkshire Hathaway’s healthcare venture, said closing the clearinghouse is an “astonishing and unconscionable blow for access to scientific information.”

Valerie King, M.D., director of research at the Center for Evidence Based Policy at Oregon Health and Science University, said in a tweet that eliminating the NGC is “saving pennies to cost millions.”

“There’s a whole lotta scrambling to save/recreate something that would have taken pennies to maintain,” King said in a second tweet.

The medical community reportedly launched petitions to clone the site.

ECRI Institute to the Rescue

ECRI Institute, the independent nonprofit that built and maintained the clearinghouse for the government since its inception 20 years ago, immediately announced that it would continue to provide clinical guidelines.

The Institute said it will launch an interim guidance resource this fall that houses “current, properly vetted evidence-based clinical practice guideline summaries and other information.” The first version of the resource site will allow clinicians to search ECRI summaries of available guidance and will be updated to be more user-friendly and offer decision-making support.

“Not all guidelines are created equal. Clinicians want to know what stands behind a particular recommendation, and whether they can trust that recommendation,” Jane Jue, M.D., ECRI’s medical director, said in the announcement. “Trustworthy guidance is the real value we will be providing.”

“The initial site will enable users to search and retrieve ECRI’s summarizations of clinical practice guidelines from hundreds of participating guideline developers and will include unbiased evaluations on the rigor and transparency of guidelines against the National Academy of Medicine (formerly the Institute of Medicine) standards for trustworthiness.”

The second phase will feature advanced search capabilities, support for guideline implementation and decision-making, and an enhanced user interface.

“For 20 years, the medical societies and professional associations that develop clinical practice guidelines have trusted ECRI Institute to maintain the integrity of their guidance and disseminate it to a larger audience,” says Lisa Haskell, MSOT, project manager, ECRI Institute. “We are delighted to be able to continue those relationships.”

According to the Institute, participating guideline developers will be able to access and contribute to the website free of charge.

For more information, visit www.ecri.org/guidelines or contact ECRI Institute by e-mail at guidelines@ecri.org; or by mail at 5200 Butler Pike, Plymouth Meeting, PA 19462 USA.