Where did the AHRQ clinical guidelines site go—and when is it coming back?

For nearly 20 years, the Agency for Healthcare Research and Quality (AHRQ) was the central repository for national clinical guidelines (www.guidelines.gov). But it was shut down in July 2018 due to federal budget cuts, making the library of guidelines unavailable and inciting outrage among medical researchers. However, an interim replacement may bring the guideline repository back this fall.

The AHRQ, an agency of the US Department of Health and Human Services (HHS), originally created the National Guideline Clearinghouse (NGC) in 1997 in partnership with the American Medical Association and what is now America’s Health Insurance Plans (formerly the American Association of Health Plans). In January 1999, AHRQ made the online database available to the public, becoming a go-to resource for the health-care community.

“The NGC mission was to provide physicians and other health-care professionals, health-care providers, health plans, integrated delivery systems, purchasers, and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation, and use,” according to AHRQ.

But on July 16, 2018, the NGC site went dark following decreases in AHRQ’s funding.

‘This is a big deal’

“The official explanation is maddening enough: a budget shortfall that roughly equals the amount [former HHS secretary] 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,” according to an editorial in The New York Times.

“But the more complete explanation—involving political discord over the site’s parent agency and sustained indifference on the part of doctors and patients—should concern anyone worried about the state of American health care,” wrote The New York Times editors.

That “political discord” refers to attacks over the years intended to weaken or altogether eliminate the AHRQ, resulting in funding cuts of about $120 million since 2010, adjusted for inflation.

The “sustained indifference” may simply be an unawareness of the value, availability, and breadth and depth of the library of clinical practice guidelines.

“The public doesn’t realize this is a big deal, but it is,” wrote a commenter on Reddit. “When medical services develop guidelines and protocols, they usually don’t start from scratch and reinvent the wheel—they look for documents like these as a basis for developing the treatment guidelines and protocols that are used on, well, everyone who participates in health care in the US.”

“This has been a valuable resource for health-care organizations, especially small and rural organizations with limited resources,” wrote another poster.

The NGC wasn’t only a repository. It also created guideline summaries, in which it condensed clinical practice guidelines and their recommendations, and graded the strength of the key recommendations made. In addition, the NGC website had advanced search features using a “classification scheme” to make it easier to find and obtain information, as well as to filter and compare guideline summaries.

Rising from the ashes

The day after the NGC website went offline, ECRI Institute, of Plymouth Meeting, PA, announced plans that it would pick up where the NCG left off and provide access to clinical guidelines. A nonprofit organization, ECRI was the contractor that AHRQ had used to develop and maintain the information on the NGC website since it began.

A statement released by ECRI said it will initially create an interim website that will offer guideline summaries and will include “unbiased evaluations on the rigor and transparency of guidelines” using the National Academy of Medicine’s standards for trustworthiness.

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

Eventually, the organization plans to roll out advanced search capabilities, support for guideline implementation and decision-making, and an enhanced user interface on its website.

The AHRQ, as a government agency, provided the NGC website for free to the public. How ECRI will pay for its website appears to still be up in the air, but the organization said it’s exploring external funding sources.

In any event, ECRI expects to launch its interim website at the end of September or early October 2018.