How AHRQ's low profile threatens work on healthcare best practices

In 2001, Dr. Peter Pronovost at Johns Hopkins Medicine developed a step-by-step checklist to prevent line infections in catheters inserted into a vein to supply a patient with nutrients and medicine. That year, 43,000 ICU patients in the U.S. had central line-associated bloodstream infections, which kill 12% to 25% of victims and cost an average of $70,000.

Pronovost's list reminded doctors of the fundamentals when they inserted these lines, including washing their hands with soap and wearing a sterile mask, hat, gown and gloves. Infection rates in the ICU slowly dropped to zero, and Pronovost began considering how to expand this tool beyond Johns Hopkins.

The Agency for Healthcare Research and Quality funded Pronovost's early efforts at $500,000 a year for two years to spread the program across Michigan. To spread it further, state by state, the efforts received additional funding from the American Hospital Association and some philanthropic support. By 2009, central line-associated bloodstream infections in ICU patients in the U.S. had dropped to 18,000.

AHRQ—pronounced “arc” by wonks—is quietly lauded by fans and vocally scorned by detractors. Its mission of figuring out how to improve the healthcare system is all the more daunting for its relatively puny annual budget that for several years has hovered around $430 million.

But research supported by AHRQ, sometimes solely so, has transformed the underpinnings of a sector that not only directly manages life and death but also encompasses nearly one-fifth of the U.S. economy. The HHS agency's anonymity might be inherent in the nature of its work, but its obscurity has serious implications as federal healthcare policy is thrown into tumult with the election of Donald Trump to the presidency.

“If an airbag goes off in your car, you know it saved your life,” said Michael Millenson, a national healthcare consultant who also teaches at Northwestern University's Feinberg School of Medicine. “If a physician does a checklist before your surgery and finds a problem that could've killed you, not only will you not see it because you're asleep, but nobody will attribute that to a government effort to get checklists used in operating rooms.”

Without AHRQ, Pronovost said, the checklist that he developed, which by now is widely credited with saving countless lives, would not exist as we know it today. “Without a doubt,” he said.

The applied patient safety research supported by AHRQ fuses basic and clinical research, but that brand of synthesis gets a tiny amount of federal money compared with the research supported by the National Institutes of Health. AHRQ's estimated budget for fiscal 2017 is $433 million. For the NIH, it's in the vicinity of $32 billion. Applied patient safety research also adopts a vastly different approach from basic and clinical research—more like an engineer who works backward from a solution, Pronovost said.

“Part of the lack of progress is that we haven't viewed it as science,” Pronovost said. “Of course we need basic and clinical research, but we also get to a point where we say, 'OK, how are we going to apply this in a comprehensive way?' The number of examples we could give that we're confident reduced (patient) harm are really, really small.”

In some ways, that distribution of resources mirrors the values and priorities of society at large: scant attention to infrastructure and the drudgery of systems research compared with the flashier achievements of discovering innovative therapies and treatments.

“NIH cures illness,” Millenson said. “If I give AHRQ money, I'm going to help our healthcare system run better? What does that mean? It's a vague kind of thing.”

Work that AHRQ has guided and supported has taken root and expanded to become nationally lauded solutions to some of the most basic problems in healthcare. But the agency rarely gets credit.

The University of New Mexico's Project ECHO, a telehealth initiative that supports and trains clinicians in remote places, began in 2003. It has been adopted by the U.S. Army, and hospital systems have taken advantage of it to reach underserved remote communities. When the New York Times wrote about Project ECHO in 2014, it mentioned early funding from the Robert Wood Johnson Foundation and from the Centers for Disease Control and Prevention in 2012—not the nearly $1.5 million AHRQ granted Project ECHO from 2004 to 2008.

Sometimes, however, its findings are overlooked for years—or ignored entirely.

AHRQ commissioned a report in 2006 on pay-for-performance programs, which are supposed to reward providers for quality of care, not quantity. Medicare's Hospital Value-Based Purchasing program, whose recently published 2017 results suggested the program had little effect, ignores key points in the report, said Francois de Brantes, executive director of the Health Care Incentives Improvement Institute.

“Maybe AHRQ's role should be to look at what's going on in the field,” de Brantes said. “Maybe dust off some of the work you've done, get it refreshed or hold a press conference and say, 'We've known this 10 years. Why aren't you paying attention?' ”

The agency has long supported work on antimicrobial stewardship in nursing homes, recalled Elizabeth Frentzel, a principal research scientist at the American Institutes for Research who is directing work on an AHRQ-funded guide to such stewardship. One such research project on antibiotic use in nursing homes began in 2003, and two others in 2014. It wasn't until 2015 that the CDC and White House began to call attention to the issue in a highly public way.

“In many ways they're at the forefront of research and activities to support practical research to improve quality of care,” Frentzel said.

But while that kind prescience is laudable, the agency's work doesn't serve anyone if it's buried in an archive.

Dr. Andy Bindman, who became AHRQ's director in May, knows this. “We don't want a little evidence museum here at AHRQ,” he said. He readily admitted that the agency could—and perhaps should—toot its own horn more.

“We're really here to facilitate and to enable organizations to do the work that they need to do to improve quality and safety,” he said. “We haven't said, 'Well, to use our stuff, make sure to write AHRQ in every other sentence.' Maybe I need to think about that—as an organization, how to make sure we get a little bit of the credit.”

AHRQ's weakness in self-promotion plunged it into existential crisis last year. Republicans in Congress unsuccessfully attempted to eliminate the agency's funding and do away with the agency entirely.

“The funding in this bill is targeted to programs that are proven to produce results,” House Appropriations Committee Chairman Hal Rogers said in a statement about the 2015 spending bill, which boosted NIH funding by $1.1 billion. “Great efforts were made to ensure none of the funding in the bill is spent wastefully or inappropriately,” including by “terminating unnecessary programs.”

Rogers' office did not respond to multiple requests for an interview.

With Trump in the White House and Congress controlled by Republicans who have sworn to repeal and replace the Affordable Care Act, how federal healthcare policy could be transformed in next four years is anyone's guess.

Bindman said AHRQ's focus would not change. “We have not received any indications at this point that there will be any changes in AHRQ's mission,” he said.

Millenson attributed AHRQ's lack of congressional champions to the fact that “nobody knows who they are or what they do.” Even before the election, prospects for changing that appeared slim.

“If you say, 'Is the public aware?' the answer is no,” Pronovost said. “In many ways, I fault myself and other thought leaders in this. We preach to the choir.”