On November 12, Research!America hosted a fireside chat with Dr. Nakela Cook, the Executive Director of the Patient-Centered Outcomes Research Institute (PCORI). A cardiologist and health services researcher, Dr. Cook spent 12 years at the National Heart, Lung, and Blood Institute (NHLBI) before joining PCORI in 2020. She shared insights on how PCORI advances patient-centered research that values lived experiences and highlighted past accomplishments as well as current and upcoming initiatives.
What is PCORI?
PCORI is a unique organization in that it is federally funded but not a federal agency and not subject to the annual appropriations process in Congress. Instead, it is a government-sponsored nonprofit established through the Affordable Care Act (ACA) and funded by the Patient-Centered Outcomes Research Trust Fund (PCORTF). Congress reauthorized PCORI in 2019, funding it through 2029.
The organization has a broad mandate—its research touches most if not all health issues—but a narrow focus. i.e., patient-centered comparative clinical effectiveness research. CER examines the potential benefits and harms of existing treatments and interventions, which in turn helps patients, caregivers, and doctors make better-informed healthcare decisions. This distinguishes PCORI’s work from other federally-funded health research, such as that conducted at the National Institutes of Health (NIH) which often emphasizes discovery. PCORI’s mission is to build a more inclusive, representative, and patient-centered health research ecosystem by actively involving patients and communities in research as well as making study findings easily accessible to and usable by the public. Dr. Cook emphasized PCORI’s role in bringing research out of academia and directly to the patients.
Since its initial authorization in 2010, PCORI has funded more than 2,400 projects across the country (click here to see their research portfolio). Its research and funding opportunities are guided by the National Priorities for Health and a Research Project Agenda.
Key Initiatives and Accomplishments
During the call, Dr. Cook highlighted several of PCORI’s most important accomplishments. Perhaps most notable is the National Patient-Centered Clinical Research Network, or PCORnet. This is a national resource, funded by PCORI, that offers “a fully integrated network where vast, highly representative health data, research expertise, and patient insights are built-in and accessible from the very start.” PCORnet provides researchers with access to standardized data from over 47 million patients across the country, facilitating large-scale studies to answer our most pressing health questions. Although it is meant to support CER, PCORnet supports other health research, including that funded by other federal agencies such as NIH.
Dr. Cook also spoke to the role PCORI has played in bringing patients, caregivers, practitioners, and others from the broader healthcare community into the research process. One avenue for this line of work is the Eugene Washington PICORI Engagement Award Program. Through these awards, PCORI not only helps communities build the capacity and skills needed to effectively engage in patient-centered CER, but also helps researchers be better partners to patients and communities involved in their work. So far, the organization has funded over 900 engagement awards. Relatedly, PCORI also funds research on the science of engagement to learn how scientists can better bring community partners into the research process.
PCORI has also seen great success in funding dissemination and implementation projects that “actively facilitate the uptake and integration of evidence from PCORI-funded studies, in the context of related evidence, into real-world practice.” Further, PCORI provides researchers with a dissemination and implementation framework and toolkit.
Finally, Dr. Cook noted that PCORI is one of the few health research funders that has a methods portfolio. The organization funds research examining design questions within CER, including outcome assessments and best practices for data collection.
