Madelyne Greene, Patient-Centered Outcomes Research Institute
Flavia Bianchi, Patient-Centered Outcomes Research Institute
Kristin Carman, Patient-Centered Outcomes Research Institute
Mabel Crescioni, Patient-Centered Outcomes Research Institute
Caroline Davis, Patient-Centered Outcomes Research Institute
Dominick Frosch, Patient-Centered Outcomes Research Institute
In this presentation, we will discuss the development and ongoing implementation of PCORI’s Science of Engagement funding portfolio and highlight early learnings about engagement best practices, spanning the spectrum from input to true co-leadership on research teams.
Research teams and funders are increasingly recognizing the impact of including members of directly impacted communities in health research. When community members, patients, caregivers, and others with unique perspectives are truly integrated into interdisciplinary research teams, there is increased potential for meaningful, effective, relevant, and scalable discoveries. In 2022, PCORI initiated the first of nine cycles of funding for the Science of Engagement (SoE) funding opportunity in order to grow the scientific evidence about effective ways to engage non-researcher partners, integrate them into research teams, and measure the experience and impact of engagement and integration. The goal of the SoE funding is to build an evidence base on engagement in research, including measures to capture structure, process, and outcomes of engagement in research; approaches that lead to effective engagement in research; and how engagement approaches should be modified for different contexts, settings, and communities to ensure equity. PCORI requires all research awardees to engage with patients and other partners in impacted communities, and expectations for patient engagement are increasingly common across funding sources. However, there are significant gaps in evidence supporting specific engagement methods and demonstrating the impact of engagement, especially when patients and other stakeholders are incorporated as full members of the scientific team.
To date, PCORI has funded 3 cycles of research projects focused on developing the science of engagement in research, including 6 awards that aim to develop and validate measures that can be used across engaged research studies and 7 awards that test best strategies for conducting engaged research. Science of Engagement awardees are also involved in a Learning Network, which provides field-building opportunities for research teams to share best practices and lessons learned about conducting high-quality health research with patients, caregivers, and other community members as true research partners and co-leaders of research teams.
In this presentation, we will summarize and discuss the structures, members, and functioning of these 13 interdisciplinary and patient-engaged research teams. We will highlight lessons learned in their project execution so far about keys to success in building a strong research team to accomplish research focused on patient and stakeholder engagement. We will also review early learnings from the funded research studies, with a specific focus on new evidence related to the impact of integrated research teams. We will describe how the SoE portfolio constitutes a promising step forward in moving patient-oriented health care research towards truly integrated, interdisciplinary, and multi-perspective team science.