PCORI's Influence on the Culture of Research

PCORI has long prided itself on what we’ve referred to as research done differently. That means patients and other stakeholders are at the center of every step, from prioritizing research topics, to reviewing applications for funding, to refining research questions and study design, to dissemination of results. We had a strong sense that putting stakeholders in the driver’s seat would make our results more relevant and useful.

We also expected that others would adopt this concept in their work after we’d demonstrated that research developed this way gains quick adoption and affects healthcare and outcomes. Such a demonstration takes time, so we’ve been pleasantly surprised to see that the concept has already taken root elsewhere.

An Idea Spreads

Influencing others to make research more patient centered is one of the three goals outlined in our strategic plan. We’ve been pleased that numerous organizations have cited our influence on their efforts toward becoming more patient centered in their own work. For instance, PCORI is credited as part of the inspiration for a Patient Engagement Advisory Committee at the Food and Drug Administration (FDA) Center for Devices and Radiological Health. PCORI’s Advisory Panel on Patient Engagement and the PCORI Engagement Rubric, which serves as a framework for stakeholder input on PCORI decision making, informed the creation of this FDA committee.

The PCORI Engagement Rubric also guided the Centers for Medicare and Medicaid Services in its efforts to partner with patients to develop quality measures. In another example, Debra Fiser, MD, of the University of Arkansas for Medical Sciences, said PCORI’s approach inspired her to establish a center for patient-centered comparative clinical effectiveness research (CER).

There are additional illustrations of our influence that we’ve learned about from the healthcare community—you can read about other examples here—and undoubtedly many instances we haven’t observed yet.

We see further evidence in the just-completed eight-year review of our work by the US Government Accountability Office. Its report notes that stakeholders told GAO, “PCORI’s efforts to engage patients in the research process have changed the way research is conducted for the better, such as prioritizing research outcomes that are most meaningful to patients.”

We've been pleased that numerous organizations have cited our influence on their efforts toward becoming more patient centered in their own work.

Assessing Our Influence on Others

We use detailed evaluation efforts to measure our progress and learn from it. In addition to noting increases in organizations’ support and resources for engagement in research, we track the use of PCORI Methodology Standards and PCORI stakeholder-engaged approaches in research, and the development of infrastructure to support PCOR. We’ve observed over 170 citations of the methodology standards in published literature to date.

We have detected our influence in other demonstrable ways as well, including training of researchers and clinicians in patient-centered outcomes research, and creation of journal policies regarding how research results are made available to the public.

What we have learned is that our focus on research done differently is influencing others to give patients a more active role in their work. We also have found repeatedly that awardees who do PCORI-funded projects sustain their commitment to patient-centeredness beyond their initial funding. "It is hard to imagine ever doing another study where I don’t start out with patients and families first,” says Elizabeth Cox, MD, PhD, principal investigator of a PCORI-funded study at the University of Wisconsin, Madison. “It absolutely changes the way we look at a project and the way we do business.”

While we are already witnessing PCORI’s approach to research spreading, we are still committed to evaluating all aspects of PCORI’s approach. Such evaluation will demonstrate if and how our research has a meaningful impact on patients and their caregivers.