Engagement in Research
By "engagement in research," we refer to the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from topic selection through design and conduct of research to dissemination of results. We believe that such engagement can influence research to be more patient centered, useful, and trustworthy and ultimately lead to greater use and uptake of research results by the patient and broader healthcare community.
Effective engagement of patients and other stakeholders in research requires a well-thought-out plan. So, all applications for PCORI funding must include an Engagement Plan, and we evaluate that plan in our review process. Because we recognize that engagement can take many shapes, and it varies with the nature of the research, we don't require specific activities. Instead, we encourage applicants to bring their most creative engagement ideas forward.
Who are Healthcare Stakeholders?
A broad range of communities have a stake in the effectiveness of our healthcare system. In the term patient partners, we include patients who are representative of the population of interest in a particular study, as well as their family members, caregivers, and the organizations that represent them. Other stakeholder partners include members of constituencies based on professional, rather than personal, experience. These can include clinicians, healthcare purchasers, payers, industry, hospitals and other health systems, policy makers, training institutions, and researchers. Some individuals may fit into several categories.
How Can Researchers Engage Stakeholders in Research?
We seek to support research that includes authentic involvement of patients and other stakeholders. Our Methodology Standards include requirements associated with patient-centeredness and engagement.
Engagement can take many forms, so we ask teams to come up with their own, appropriate blueprints for partnership. Because many researchers have not had experience engaging patients and other stakeholders in the planning, conduct, and dissemination of research, our Engagement Program offers guidance tools. These include the PCORI Engagement Rubric and sample Engagement Plans from our funded research portfolio, including our methods portfolio.
These tools are useful not only to researchers applying for funding but also for the patient and other stakeholder communities to better understand their potential role and opportunity as partners in research. The rubric is also a tool for our merit reviewers as they evaluate engagement in proposals, and our awardees as they carry out their projects. You can also see examples of engagement in our Research in Action features.
PCORI Engagement Rubric
The PCORI Engagement Rubric outlines ways that engagement in research can occur. It provides both general guidance and suggestions for completing the four sections of the Engagement Plan required in applications for PCORI funding.
The rubric is structured according to the three phases of research—planning, conduct, and dissemination. Each section includes potential engagement activities, tips for how to demonstrate those activities in an Engagement Plan, and brief examples from successful applications.
Initially, we worked with our Advisory Panel on Patient Engagement to develop what we called the PCORI Patient and Family Engagement Rubric. It identified promising practices, from our first three funding cycles, engaging patients, family members, caregivers, and the organizations that represent them.
We revised that resource as the PCORI Engagement Rubric, emphasizing the value of engagement by all healthcare stakeholders. A newly revised rubric is incorporated into documents for the Cycle III and later funding cycles.
PCORI’s Compensation Framework is a guidance document created by our Advisory Panel on Patient Engagement in coordination with PCORI staff. The framework was developed in response to significant confusion and uncertainty about how best to compensate patient partners serving on research teams. PCORI has stressed that the expertise that patient partners provide—the lived experience as a person with an illness or injury or the caregiver or family member of such a person—is incredibly valuable, and contributions of these partners should be recognized accordingly. While the framework does not provide specific direction on payment amounts or modes of payment, it outlines the various factors to consider when budgeting for patient partner involvement.
Sample Engagement Plans
We also provide examples of actual Engagement Plans from our funded projects. Take a look at our two sets of plans for patient and other stakeholder engagement in PCORI-funded projects: Sample Engagement Plans and Sample Engagement Plans from Methods Portfolio. These plans are provided solely for educational purposes, and we welcome other approaches.
Marc Boutin, JD, Executive Vice President and Chief Operating Officer of the National Health Council (NHC) and member of the PCORI Advisory Panel on Patient Engagement, describes the stages of patient engagement in research as outlined in the rubric.
Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org and member of the PCORI Advisory Panel on Patient Engagement, describes why implementing a rubric to capture exemplary methods of meaningful engagement is critical, and why PCORI is best aligned to do this work.
|Promising Practices of Meaningful Engagement in the Conduct of Research
Listen to PCORI-funded researcher and stakeholder partners discuss successful practices of patient and stakeholder engagement in all stages of the research process, from helping craft the research question to ensuring dissemination of the research results.
» Visit the event page
|Observing PCORI-funded Engagement in Action
Watch a documentary featuring the Tri-County Rural Health Network Community Connectors Program, a component of Tri-County’s PCORI-funded project with the University of Arkansas for Medical Sciences. This is an example of engagement in action, supported by the PCORI Pilot Project Addressing Mental Health Needs of Rural African Americans.
» View the documentary (the Community Connectors Program is featured in the opening segment)
|Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement
Learn more about the Institute of Medicine-sponsored workshop in which PCORI and other leading healthcare, consumer, and patient organizations explored ways to advance patient and family engagement meaningfully in the healthcare system.
» View a short report and video summarizing the two-day workshop
|Transforming Patient-Centered Research: Building Partnerships and Promising Models
Explore the framework for how PCORI conducts patient-centered research, which includes meaningful roles for patients and other healthcare stakeholders throughout the research process.
» Read the workshop report
» View a video of the workshop plenary sessions
Posted: February 5, 2014; Updated: October 12, 2015