In an ironic twist, the agency charged with fighting the kind of medical misdiagnosis that had Robert F. Kennedy Jr. on the brink of unnecessary brain surgery is set to be eliminated in the reorganization plan Kennedy announced for the department he heads.
The Agency for Healthcare Research and Quality is the only federal agency specifically charged by Congress with targeting mistakes like the famous misdiagnosis suffered by Kennedy. Back in 2010, as a New York Times article related, Kennedy was about to fly to Duke University Medical Center to undergo surgery for a suspected brain tumor when he received a call from a local physician saying his symptoms were likely being caused by a dead parasite worm inside his head. Subsequent scans confirmed the correct diagnosis, and no surgery was necessary.
Kennedy’s personal experience vividly illustrates the conclusion of a 2015 National Academy of Medicine report that “most people will experience at least one diagnostic error in their lifetime, sometimes with devastating consequences.” Nonetheless, AHRQ’s staff of about 300 is reportedly facing a reduction of as much as 90%. Kennedy announced on March 27 his intent to eliminate 10,000 jobs at a Department of Health and Human Services that’s already shrunk from 82,000 to 62,000 employees since the Trump administration took charge. The new job cuts are part of a larger reorganization that merges AHRQ with the Office of the Assistant Secretary for Planning and Evaluation to create a new Office of Strategy.
Two sources involved in the effort to save AHRQ told me it’s unclear whether those directing the drastic federal employee reductions even understand AHRQ’s activities or the impact of their disappearance. (Disclosure: I’m a member of AHRQ’s National Advisory Council, but the agency had no involvement with this article.)
Preventing Harm, Saving Money
AHRQ’s fiscal 2024 budget of $369 million constitutes a minuscule 0.02 percent of total HHS spending. Even in private-sector terms, it’s roughly the revenue of two average Costco warehouse. Yet the agency’s patient safety work has an outsized effect in both human and economic terms.
“Cutting AHRQ’s funding,” Patricia McGaffigan, a senior advisor at the Institute for Healthcare Improvement, told MedPage Today, “will have devastating consequences, including unnecessary deaths and harms to patients and the workforce.” Added David Newman-Toker, a physician who heads Johns Hopkins’ Armstrong Institute for Diagnostic Excellence, “From the perspective of diagnostic safety and quality…words like ‘catastrophic’ come to mind.”
As an example of impact, in its its fiscal 2025 request for just $20 million for addressing diagnostic safety problems, the agency noted that diagnostic errors affect “12 million Americans yearly at an estimated cost of $100 billion.” That’s a 500-to-1 financial return.
Looking at the “Make America Healthy Again” effect, the strongest argument for AHRQ might be the conclusions of a 2016 medical journal article whose lead author, Dr. Martin Makary, was recently confirmed as commissioner of the Food and Drug Administration. The article called medical error “the third biggest cause of death in the U.S.” and said it “requires urgent attention.”
Eviscerating AHRQ
Unfortunately, evidence hasn’t helped AHRQ evade creeping evisceration. I wrote recently about Heather Sherman, a mid-level AHRQ employee fired simply because her probationary status made it easy to do so. Sherman was leading an effort to get hospitals nationwide to share their patient safety problems and solutions – exactly the type of effort specifically recommended in the Makary article nearly a decade ago!
Meanwhile, the agency just cut off funding for the longstanding Patient Safety Network, better known as simply PSNet, according to an email I and others received from Patrick Romano, a University of California-Davis pediatrician who has served as co-editor-in-chief of the network. Romano said his team supporting the network was advised there were “shifting priorities.” In his email, he encouraged the “millions of readers across the country…to access PSNet resources while they remain available.”
Kennedy might also ponder a patient safety connection to his boss. As I’ve written, Butler Memorial Hospital, the Pennsylvania facility to which Donald Trump was rushed after an assassination attempt last summer, fortunately had a long history of above-average patient safety performance. Safe care is invisible, representing harm that could have happened but didn’t, but the presence of safe care can become unexpectedly crucial to anyone at any time, no matter who they are.
Real-World Impact
In an interview with Politico, former AHRQ director Robert Otto Valdez described AHRQ’s focus as determining whether what works in an experimental setting – i.e., the kind of studies funded by the National Institutes of Health or used by the FDA in drug and device approval – works in the complex environment of actual patient care.
“Real-world experiences and surveillance is kind of what we do,” Valdez said. As one important example, he cited the fast-moving field of artificial intelligence, where AHRQ is examining the safety and effectiveness of the AI applications approved by FDA in their actual clinical use, then feeding that information back to FDA to help regulators make better decisions.
An HHS restructuring aimed at eliminating waste and inefficiency is a worthy effort. However, eliminating AHRQ and disregarding efforts to keep Americans safe from misdiagnosis and other harm does not constitute “a win-win for taxpayers and…the entire American public,” Kennedy’s claim for the overhaul’s ultimate result.
