Psychological research funded through the Patient Centered Outcomes Research Institute is not being considered among proposed changes…so far.The Republican leadership of the House of Representatives has just rolled out its plan to revise the Patient Protection and Affordable Care Act (ACA) and while most of that plan revolves around provision of services, insurance and potential tax credits, the provision of ACA of greatest interest to scientists, the Patient Centered Outcomes Research Institute (PCORI), appears to be under the radar for now.According to its website, “PCORI is funded through the Patient-Centered Outcomes Research Trust Fund (PCOR Trust Fund), which was established by Congress through the Patient Protection and Affordable Care Act of 2010. The PCOR Trust Fund receives income from three funding streams: appropriations from the general fund of the Treasury, transfers from the Centers for Medicare and Medicaid trust funds, and a fee assessed on private insurance and self-insured health plans (the PCOR fee).”Perhaps of greater interest than how it’s funded, though, is what PCORI funds. Psychologists should be gratified to learn that “mental and behavioral health” as a category, is first among the top five categories in PCORI’s research portfolio ($290 million), followed by cardiovascular health ($213 million), cancer ($188 million), multiple/comorbid chronic conditions ($186 million) and neurological disorders ($159 million). Further, of the 456 projects funded between 2012-2016, fifty-seven were awarded to psychologists (Excel Spreadsheet, 102KB) totaling $132 million, on such topics as attention deficit hyperactivity disorder, obesity, serious mental illness, traumatic brain injury, low back pain, medical decision-making, sleep apnea, and treatment of substance use disorders.Staff of the American Psychological Association’s Science Government Relations Office monitor the activities of PCORI closely. They have arranged for individual psychologists to be nominated to various advisory panels or invited to participate in thematic workshops to help shape the PCORI agenda. Among those psychologists who have won appointments are Zeeshan Butt (Northwestern University Feinberg School of Medicine) to the Advisory Panel on Assessment of Prevention, Diagnosis, and Treatment Options, and Alfiee Breland-Noble (Georgetown University Medical Center) to PCORI’s Advisory Panel on Addressing Disparities.That kind of input has borne fruit. Soon after Rebecca S. Allen (University of Alabama) was invited to participate in a multi-stakeholder workgroup on Patient-Centered Palliative Care Delivery for Adult Patients with Advanced Illnesses and Their Caregivers in March 2016, PCORI released a targeted funding announcement “Community-based Palliative Care Delivery for Adult Patients with Advanced Illnesses and their Caregivers.”At the core, PCORI’s mission is comparative effectiveness research, designed to inform health-care decisions by providing evidence on the effectiveness, benefits, and harms of different treatment options. But key to that mission is the patient-centered approach. As its website notes, “For patients, this strategy means we must provide information about which approaches to care might work best, given their particular concerns, circumstances, and preferences. For clinicians, it means we must focus on providing evidence-based information about questions they face daily in practice. For insurers, it means we must produce evidence that can help them make the best decisions on how to improve health outcomes for their members. For researchers, it means we must support for studies designed to build a badly needed base of useful evidence for improving outcomes in high-burden, high-impact conditions.”APA staff will be keeping a watchful eye on Congress as the ACA debates continue and are well-positioned to argue for the value of PCORI research thanks to the many psychologists who are funded by PCORI or who are helping to shape its scientific agenda.
Recorded exchange captures controversy over “wastebooks.”Sen. Jeff Flake (R-AZ) announced the release of his latest “wastebook” at a Washington press conference on Jan. 10, 2017. The document – titled “Porkemon Go" – lists what Flake believes to be examples of wasteful government spending, including federally funded research projects. At the press conference, Pat Kobor of the American Psychological Association’s Science Government Relations Office, raised the concern that such wastebooks misrepresent the research supported by the National Institutes of Health and other federal agencies. Together, Kobor’s comments and Flake’s response (see video) capture much of the current debate surrounding wastebooks – a debate that may become more heated as Congress and the new administration proceed with budget deliberations this year.
TRANSCRIPTPat Kobor (APA): “Publications like this are really at best incomplete, on the research projects, and at worst misleading and disingenuous, there’s context to all this research that you don’t leave room to go into detail, and worse, you don’t really ask the scientists to help explain or justify the work. You say there’s no compelling case for the drinking research. I’ll bet there is. I’ll bet you should have asked for it. I think that would have made a big difference. Reports like this make it look as if NIH is asleep at the wheel. You know, letting stuff in that doesn’t meet standards. I don’t think that’s true, but I think you feed a false narrative with a report like this.” Sen. Flake: “I think whenever you put a report out there, obviously, we’re saying to the agencies ‘Come and justify it.’ They should. I actually attended last year, it was an event where some of the researchers came in to the Russell Senate Office Building…and I went and viewed it and it was informative and like I said, some of this is basic research, a lot of it is not. A lot of it is research that is happening elsewhere through market-driven incentives, and some of it is just interesting things that we might want to know, but it’s tough to justify given other priorities that we have at the federal level. So I certainly take your point that sometimes it’s an incomplete picture at what’s going on, but we do want those who are receiving these grants to actually come forward and say ‘Hey, why is this important? Why is it the federal government that needs to fund this research?’ And that’s a good conversation to have, and I hope we’ve sparked that. Thank you.”The event that Sen. Flake mentioned attending last year was organized by APA and the Consortium of Social Science Associations. It featured scientists whose federally funded projects had been fully vetted by funding agencies but were subsequently criticized in Congress and the media. Read more about the event in this Huffington Post account.