Creating Meaningful and Effective Partnerships in Patient-Centered Outcomes Research: The Patient-Centered Outcomes Research Intsitute's Foundational Expectations for Research Partnerships

OBJECTIVES: PCORI has created an ecosystem to support requirements for engagement in research, generate evidence about the best approaches and support needed for engagement, and the immediate impact on clinical research and more distal impacts on health care. The Foundational Expectations for Partnership in Research responds to the need to incorporate this latest evidence on engagement from awardees and the larger research field to develop the critical building blocks of meaningful and effective engagemendescribe the expectations, the methodological approaches used to update earlier engagement guidance, and how the findings informed our updated expectations

METHODS: Project activities were iterative and included an environmental scan of engagement guidance and literature generated by PCORI and awardees, and organizations other than PCORI, focus groups and interviews with research teams and experts in diversity, equity, and inclusion, and a large convening with researchers, partners, patients, and other thought leaders to generate a vision and proposed content.

RESULTS: We learned that PCORI’s Foundational Expectations for Partnerships in Research must have broad applicability (i.e., accessible to those new and experienced in engagement), be specific and actionable, allow for flexibility, creativity, and continuous learning around engagement, put into action the definition of meaningful engagement and equity and inclusion principles, and provide examples of ways to address the expectations. As a result, PCORI developed the following six Foundational Expectations for Partnership in Research:

1. Diversity and Representation
2. Early and Ongoing Engagement
3. Dedicated Funds for Engagement and Partner Compensation
4. Build Capacity to Work as a Team
5. Meaningful Inclusion of Partners in Decision Making
6. Ongoing Review and Assessment of Engagement

CONCLUSIONS: These expectations are intended to drive support for greater engagement and diversity in research and provide critical information, tools, and resources to PCORI-funded investigators, patients, clinicians, and other partners on engagement, and the broader field.