Advocating to Advance Patient Centered Outcomes Research

By Tonya Saffer, Senior Health Policy Director at the National Kidney Foundation

Last week, I had the honor of walking the halls of Congress to advocate for continued patient-centered outcomes research. My companion for the day was Kimerly Coshow from the mountains in Blue Ridge, Georgia who is living with Parkinson’s. We were part of an effort to draw Congress’s attention on the need to reauthorize funding for the Patient Centered Outcomes Research Institute (PCORI).  Kim had flown to Washington, DC to advocate and attend PCORI’s 4^th annual conference.  On Capitol Hill, she and I met with her two Senators Johnny Isakson and David Perdue, and her Representative Doug Collins.

Kimerly Coshow and Tonya Saffer with a member of Sen. Isakson’s staff

Tonya Saffer and Kimerly Coshow with a member of Rep. Collins’ staff

PCORI is a nonprofit organization authorized by Congress in 2010. PCORI receives its funding through the patient-centered outcomes research trust fund (PCOR Trust Fund). The trust fund receives income from three funding streams: appropriations from the general fund of the Treasury, transfers from the Centers for Medicare & Medicaid Services (CMS) trust funds, and a fee assessed on private insurance and self-insured health plans (The PCOR Fee). Without re-authorization and continued income to the PCOR Trust Fund by September 30, 2019, PCORI will not be able to continue funding new patient-centered outcomes research.  Patient advocates wanted to get an early start in educating Congress about the critical importance of PCORI and the benefits it offers to all patients whether they have kidney disease, Parkinson’s, or struggle with other health conditions. This is the message that Kim and I teamed up to share.

PCORI research is different from what other government agencies, like the National Institutes of Health conduct. Traditional research, which produces many advances in health and science, does not always address the questions that matter most to patients. Like, what care works best for me given my current situation? Which treatment option will help me meet my personal goals and continue doing the things that matter most to me?  Many PCORI research projects seek to answer these questions as well as to help empower patients to make informed decisions about their treatment options. What’s also unique about PCORI is their engagement of patients in research. PCORI funded projects must have patients involved in the project from concept and proposal development all the way through to sharing the results of the study.  PCORI even has patients help select which proposals will get funded. PCORI has created a culture of patient engagement in research and that culture is extending to health care delivery as well.  PCORI research findings are shared publicly and stated clearly and simply so that non-researchers understand what they mean and how they can be used by patients to make better decisions about their treatment options.

Since its inception PCORI has provided $1.9 billion in funding for more than 600 research-related projects that focus not only on traditional clinical outcomes, but also on the needs, preferences and outcomes that matter most to patients.  PCORI funded research in kidney disease is helping patients make more informed decisions about their treatment options like the choice between peritoneal dialysis and hemodialysis, studying strategies to identify patients progressing to kidney failure earlier to improve their care transitions, and evaluating options to improve cardiovascular safety in hemodialysis patients. Recently, PCORI funded a National Kidney Foundation Patient Centered Outcomes Research Conference that identified the barriers to patient engagement in kidney disease research and resulted in patient driven research questions. The National Kidney Foundation will in turn fund a project to help answer one of these questions.

The research PCORI funds produces results that can help all patients be empowered and informed decision makers about their healthcare.  We hope that the Members of Congress who met with patient advocates last week have a better understanding of PCORI’s contributions and it’s need for continued funding.

Have you or are you currently participating in a PCORI funded project?  Share your experience in the comments below!