Engagement Tool and Resource Repository for Patient-Centered Outcomes Research
PCORI is committed to advancing patient-centered, stakeholder-engaged research and the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process. We do this to ensure that the results of the studies we fund are relevant, trustworthy, and more likely to be used in practice. PCORI also supports the uptake of engagement practices and methodologies within the broader healthcare research community. To encourage the spread of these practices, we have assembled a repository of engagement-related tools and resources developed and used by PCORI awardees. This searchable peer-to-peer repository includes resources that can inform future work in patient-centered outcomes research (PCOR).
Effective engagement of patients and stakeholders in research requires a well-thought-out plan. Therefore, all applications for PCORI research funding must include an Engagement Plan that outlines how stakeholder partners will be involved in all phases of the study.
The Engagement Plan must be included in all PCORI applications to describe how the research team will be responsive to Criterion 6—Patient and stakeholder engagement—under PCORI's Merit Review Criteria for funding. The Engagement Plan is evaluated as part of the research award application in the merit review process to assess the patient centeredness and engagement elements of the proposed research study.
Many aspects of an engagement plan may change or evolve between the submission of the research application and the start of the study. These changes may reflect a refinement in thinking about the study’s needs and could result in changes to the composition of the stakeholders who are involved, the restructuring of advisory boards and governance committees, or the methods for engaging stakeholders and evaluating engagement.
Recognizing that engagement methods may evolve, PCORI awardees submit a more robust engagement design using PCORI's Updated Engagement Plan template within the project’s first six months. Sample updated engagement plans are available for PCORI awardees upon request.
The Engagement Rubric identifies opportunities for stakeholder engagement in the three phases of the research project—planning, conduct, and the dissemination of results—and is grounded in a set of principles that lay a foundation for equitable partnerships. It includes real-world examples of engagement strategies and activities drawn from our research portfolio. While not prescriptive, the Engagement Rubric provides guidance to applicants for PCORI funding about potential engagement approaches to consider.
Since 2014, when the Engagement Rubric was developed, it has become an influential resource as the practice of engagement has grown.
PCORI is in the process of updating and enhancing the Engagement Rubric. The next version will incorporate findings from evaluations of our research portfolio and practice-based knowledge to incorporate evidence-based guidance for meaningful engagement, broaden the spectrum of research partner involvement, and to more explicitly address the needs of different stakeholder audiences.
Better Research Through Engagement
Find out what we mean by engagement, how PCORI engages patients and other healthcare stakeholders, and how we encourage others to do so.
Engagement Challenges, Strategies, and Resources
Read about some of the challenges that are shared by awardees and stakeholder partners and those that are unique to each group.
Roles of Patient and Stakeholder Partners in Patient-Centered Research
Learn how researchers and partners work together to conduct patient-centered research
Research Done Differently
We're committed to a new approach to health research. Learn how it’s different.
Initiating Partnerships for Patient-Centered Research
Find out how PCORI shares lessons on the ways researchers can engage with patients and other healthcare stakeholders to improve patient-centered research.
PCORI’s Compensation Framework provides guidance for establishing fair compensation levels for patients, caregivers, and organizations. While it is expected that research partners are compensated for their expertise, time and contributions, researchers may have difficulty determining the appropriate levels and methods of compensation for varied contributions to the study. PCORI’s Compensation Framework directs researchers to consider the intensity of partner involvement according to the activities and the roles and responsibilities of engaged partners.
PCORI in Practice Webinars
PCORI developed an ongoing series of webinars about advancing patient-centered outcomes research that are designed to:
- Present examples of promising practices of meaningful engagement in all stages of the research process, featuring PCORI-funded researchers and other stakeholder partners
- Demonstrate our unique approach to research done differently by highlighting our programs and initiatives
- Feature PCORI-funded projects that address unmet needs of patients, caregivers, clinicians, and other healthcare stakeholders in making personalized clinical decisions across a wide range of conditions, populations, and treatment options
- Highlight the fundamental role that meaningful engagement of patients and other healthcare stakeholders plays in our work, and how you and your community can get involved
Please take a look at our archived webinars, as they provide both theoretical and practical guidance on planning and conducting meaningful patient and stakeholder engagement in the research process.
Posted: October 30, 2018; Updated: September 16, 2019