Experience the Power of Patient-Centered Research Through PCORI

By Susan Wozniak, RN, MSHS, Metro Detroit ONS Chapter

How often have you gone to the mailbox, pulled out your latest issue of the Oncology Nursing Forum or Clinical Journal of Oncology Nursing, and excitedly read about some innovative study with game-changing outcomes that’ll revolutionize the delivery of health care—only to find that it never moves off the pages of the journal?  

What does it take to move research from the proverbial bench to the community? That was the focus of the Fourth Annual Meeting of the Patient Centered Outcomes Research Institute (PCORI), “From Evidence to Impact: Putting What Works into Action,” held from October 31–November 2, 2018, in Washington DC.

A diverse community of more than 1,000 healthcare stakeholders—including patients, caregivers, researchers, clinicians, insurers, and employers—came together to share results from completed PCORI-funded projects. PCORI, a nonprofit organization authorized by the U.S. Congress to fund comparative clinical effectiveness research (CER), has awarded $2.4 billion to more than 600 research-related projects—86 of which are directly related to cancer—to produce reliable, useful information to help the healthcare community make better informed care decisions. PCORI supports patient-centered outcomes research (PCOR) that not only focuses on traditional clinical outcomes but also on the needs, preferences, and outcomes that are most important to patients and those who care for them. From design to dissemination, all studies engage patients and stakeholders at every stage to generate meaningful outcomes for patients with a goal of improving clinical practice.    

The annual meeting opened with keynote speaker, Amy Berman, RN, senior program officer at the John A. Hartford Foundation and stage IV breast cancer survivor, providing personal and professional perspectives on the benefits of research and the need to shift care priorities to what matters most to patients. The opening plenary session, presented by a who’s who in the healthcare industry, focused on addressing patient choices and provider treatment. Discussion questions involved a number of key areas, including what’s done when one treatment approach isn’t better than another, what does it take for patients to access the care that’s right for them, and how do we care with patients versus for patients.  

Speakers in another plenary session on day two discussed how patient-centered care looks in the real world, providing outcomes from groundbreaking studies. We also heard a presentation about health policy perspective on PCOR from a panel of key congressional staffers. A networking lunch was accompanied by a conversation about PCORI’s achievements and opportunities with Capitol Hill policymakers from both sides of the aisle. Breakout sessions addressed the opioid epidemic, advanced illness, advanced decision making, the science of engagement in PCOR, and telehealth projects showing improved patient outcomes. 

We closed with keynote and plenary sessions focusing on the impact of patient-centered research on healthcare consumerism and the translational research that’s currently in progress. These studies bring new discoveries to implementation, promoting shared decision-making approaches in practice.   

If you think this sounds exciting, then PCOR needs you. Some of the ways PCORI seeks to incorporate voices from across the healthcare community into their work is through PCORI advisory panels, merit reviewers, and peer reviewers. Also, PCORI ambassadors are needed, and oncology nurses provide a valuable perspective to that work. The ambassador program is open to anyone interested in advancing patient-centered research and getting involved with PCORI.

Check out PCORI for more information or contact them at info@pcori.org if you have any questions. Get involved and be a part of research done differently.