To mark the fourth anniversary of the Patient-Centered Outcomes Research Institute (PCORI), VCU researchers Steven Woolf and Alex Krist were invited to describe the influence that PCORI has had on their work and their perspectives on clinical research. An excerpt from their guest blog article on how their research has changed as they have engaged patients and other healthcare stakeholders can be seen below. A link to the full article can be found here and on the PCORI homepage under the section “Learning from Engagement.”
During the Pilot Project, our initial efforts to satisfy requirements for PCORI grew into a genuine appreciation of the wisdom patients offer. We now seek their advice regularly, in every phase of our studies, (even those not funded by -PCORI, and we often put more stock in what they say than in the advice of our expert and academic partners.
In an arrangement formalized with our Institutional Review Board, patient advisors who were once “human subjects” are now reclassified as “co-investigators.” Patients are treated as coequal partners: patients have been coauthors of journal articles and presenters at academic conferences.
Having established a practice-based research network (PBRN) in 1996, we already valued input from primary care clinicians. But the PCORI Pilot Project drew us into closer consultation with clinicians. We formed a Clinician Advisory Board that met every other month to shape our network’s research agenda based on their priorities, needs, and experiences. Recently, we merged the Clinician Advisory Board with our Patient Advisory Board, described above. These groups have come together nicely, sharing ideas and perspectives to provide a new level of input and direction to our PBRN.
In parallel to our work on the PCORI Pilot Project, our Center on Society and Health has benefited from community engagement. As part of its research on the conditions that shape the health of vulnerable populations, the center works with civic organizations, municipal agencies, mental health professionals, law enforcement, and other groups who serve affected populations. Input from the community has been invaluable. For example, we learned that models in the published literature that link education, food insecurity, unstable housing, and violence to adverse health outcomes are incomplete when compared with models developed by residents of a disadvantaged, inner-city neighborhood. The academic models overlook important contextual factors known to the community, such as how victims and families are affected by firearm violence. These community insights have found their way into a health impact assessment we developed for Congress, issue briefs and videos on education, a request from local developers to engage public housing residents, and an investigation of the effects of firearm violence on residents of Richmond, Virginia.
Engagement increases the relevance of research to the larger agenda of improving population health. Rather than asking how patients and communities can get engaged in research, a better question is, how can we engage researchers in the work of communities? Old-school investigators (and some leaders at NIH) must abandon the outdated notion that the main utility of patients to research is as subjects for clinical trials. The trials themselves may matter little if they don’t reflect important population health questions.