The Patient-Centered Outcomes Research Institute (PCORI) has approved $9 million for the first seven studies in its Science of Engagement initiative.
The program is dedicated to funding studies to demonstrate how best to engage patients, caregivers and other healthcare community members in comparative clinical effectiveness research (CER) and other health research. The initiative aims to grow a more robust evidence base to advance patient-centered, community-driven approaches to conducting research.
PCORI noted that although earlier efforts have shown that partner engagement enhances studies in meaningful ways, little systematic evidence exists about why engagement activities achieve the observed effects and which methods are most successful so that those approaches can be employed by others. Additionally, there are critical evidence gaps about how to facilitate and promote inclusion of historically underrepresented populations as partners in patient-centered CER as well as how to measure the impact of including a diverse array of patients and other research partners on study outcomes.
“The time is right to catalyze this nascent field of study called the science of engagement in order to transform our nation’s health research enterprise into a truly patient-centered, community-driven endeavor. Such an enterprise engages those who for far too long have been largely left out of health research,” said PCORI Executive Director Nakela L. Cook, M.D., M.P.H., in a statement. “As more and more research teams seek to conduct research in a patient-centered way, PCORI’s Science of Engagement initiative addresses the surging demand for data on how to do it robustly, inclusively and genuinely, and for validated and rigorous ways to measure its effects.”
The first seven studies funded through this initiative focus on the foundational areas of developing or validating measures of engagement and developing and testing engagement techniques. One project, for example, will develop a survey of co-creation in the design and conduct of studies and another will develop a survey of adolescent engagement in research. Another study will compare methods for engaging children, adolescents and their parents with low health literacy.
Several of the projects will consider strategies to improve outreach to and involvement of populations that have been underrepresented in research, including people with limited health literacy skills, people from underserved communities, and children and adolescents.
Research teams for all funded studies will participate in a PCORI Science of Engagement Learning Network that will provide opportunities to engage in peer learning and sharing as well as offer lessons learned to the field.
PCORI launched the Science of Engagement initiative in 2022 with an initial investment of up to $36 million over three years to bolster development of a toolbox of validated measures of engagement. Future Science of Engagement funding awards will advance evidence on the mechanisms by which engagement techniques contribute to research studies’ processes and outcomes and test which approaches are most effective.