After a contentious start a decade ago, the Patient-Centered Outcomes Research Institute was able to demonstrate how much perceptions have changed when Congress recently reauthorized its operations for another 10 years with bipartisan backing.
The formation of the institute, often called PCORI, was one of the most controversial elements of the Affordable Care Act because of concerns flourishing among Republicans that it would lead to rationing of care.
The institute funds comparative effectiveness research, which examines the benefits and risks of medical interventions to help patients and clinicians make better healthcare decisions. There were strong concerns among some that the research would cause insurers to deny coverage when factoring in cost differences between interventions. At one point, it wasn’t certain if PCORI, or something like it, would even make it into the ACA.
Comparative effectiveness research fell into the commentary about “death panels” among conservatives during the ACA debates. Former Alaska Gov. Sarah Palin coined the term to describe governmental entities and others that might have the power to decide if someone can get medical care.
More recently, though, descriptions of PCORI include words like “crucial” and “innovative,” sentiments that helped the institute to get reauthorized by Congress in December.
During the reauthorization debate, the most heated discussions were over how long PCORI should be reauthorized for. Should it be 10 years or three? It ended up being reauthorized for the full 10 with funding direct federal appropriations similar to what it received under the ACA, which was $150 million annually. It also receives additional funding—about $255 million in fiscal 2018—from a mandated tax on insurers. The recent reauthorization removed funding from the Medicare Trust Fund and it will now be funneled through congressional appropriations but it totaled $115 million in 2018. Overall, total revenue of PCORI was about $507 million in 2018.
And concerns about care rationing also seemed to have dissipated considering the reauthorization changed the language of PCORI’s statute with explicit mentions about its responsibility for research to consider the economic burden of interventions on patients, including out-of-pocket costs. The language in the ACA was less explicit about how PCORI should factor in costs.
All of this signals to policy experts and researchers that PCORI and the research it supports is better understood than when the ACA passed a decade ago. By evaluating the value of medical interventions including certain drugs and devices, comparative effectiveness research is overwhelmingly viewed by researchers and patient advocacy groups as a necessary investment to improve patient care and lower rising healthcare costs.
“Comparative effectiveness research has entered the mainstream,” said Dr. Albert Wu, director of the Center for Health Services and Outcomes Research at Johns Hopkins Medicine who has conducted research funded by PCORI. “Comparative effectiveness research and PCORI ended up being perhaps the least controversial part of the ACA, which is gratifying but also maybe not so surprising because people are interested in what works better when making healthcare decisions. That is a bipartisan issue.”