New Engagement Award Builds Small Organizations' Capacity for Comparative Clinical Effectiveness Research

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PCORI believes research that involves patients and other participants—like small organizations—from the start will lead to useful results more likely to be taken up in clinical practice. This is why PCORI is proud to support its first-ever cohort of awardees comprising exclusively small organizations. The heart of PCORI’s work is funding patient-centered comparative clinical effectiveness research (CER)—research designed to help patients and those who care for them make better-informed decisions about their health and health care. Engaging patients, caregivers, clinicians and other stakeholders is at the core of PCORI’s patient-centered approach to CER funding.

PCORI requires an engagement component in every study it funds, and beyond this, it supports projects designed specifically to foster engagement and build capacity for awardees to participate in patient-centered CER. PCORI's Engagement Award Program is intended to bring more patients, caregivers and other community members into the research process and build communities better able to participate in CER. The clinical research landscape is complex, and the rigor and resources required to conduct CER means it is not always immediately accessible to the everyday patient or those who care for or advocate for them. Through its work with hundreds of awardees, PCORI identified that many smaller organizations have unique needs and capabilities, and wanted to build their capacity to participate in CER.

This is how, after many months of gathering input and expertise from small organizations and their members, the new Building Capacity for Small Organizations to Engage in PCOR/CER PCORI Funding Announcement came to be. Applications were received in the fall of 2022 and reviewed in early 2023, and in July of 2023 eight awardees launched their respective projects. The cohort is a diverse one, with organizations located across the United States and focusing on a variety of conditions—especially rare diseases and chronic conditions—as well as a variety of populations, from veterans, LGBTQIA+, and rural residents; refugee women and children; and young adults. But they each have a few key similarities. Each awardee has an average yearly operating budget of $1.5 million or less—and each is brimming with excitement and enthusiasm for this essential work.

As small organizations, the new awardees are connected to their communities in unique ways. Many of the awardees are patient-led or locally focused, with unique perspectives to share. A key part of the program is the support awardees will provide one another, in addition to the technical assistance and support they will receive from PCORI. Educational webinars with subject matter experts, coaching and a mentorship program are among the technical assistance elements supporting the awardees to navigate the process of creating meaningful engagement in research. Their participation in these elements will furthermore enable them to form new connections with one another, building a web of knowledge and expertise bigger than the sum of its parts.

PCORI exists to support research that is guided by patients, their caregivers and their many other advocates. Through working with small organizations with niche expertise and strong community connections, we continue to facilitate research which is truly patient centered, and to widen the circle of all those who participate.