image: The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. view more
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WASHINGTON, DC – The Patient-Centered Outcomes Research Institute (PCORI) today announced the approval of $9 million for the first seven studies through its groundbreaking Science of Engagement initiative. An unprecedented research program dedicated to funding studies to demonstrate how best to engage patients, caregivers and other health care 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.
Since its establishment in 2010, PCORI has accelerated the movement toward transforming health research into a community-driven, participatory enterprise that involves those who ultimately use and rely on study results as partners throughout the research life cycle. PCORI’s efforts have produced a growing number of resources for building multistakeholder research teams and collaboration in CER studies.
Although these and others’ efforts over many years 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., MPH. “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.
“The comprehensive approach and scale with which PCORI has implemented engagement—requiring engagement in all the comparative clinical effectiveness research studies it funds—has served and continues to serve as a laboratory for innovation,” said Harv Feldman, M.D., MSCE, PCORI’s deputy executive director for patient-centered research programs. “PCORI is building on its important work in this area to date to advance a systematic understanding of how to most effectively conduct engagement in research with different individuals and communities. This will strengthen patient-centered, community-driven CER as well as benefit the entire health research enterprise.”
The Science of Engagement funding awards were approved pending a business and programmatic review by PCORI staff and the issuance of formal award contracts. With these latest awards, PCORI has invested more than $4 billion to fund patient-centered CER and support other projects designed to enhance CER methods, engagement, dissemination and implementation, and the infrastructure necessary to conduct CER efficiently. Details of all studies and projects approved for PCORI funding to date are available on PCORI’s website.
About PCORI
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.