Engagement in Research

In PCORI-funded research, patients and other healthcare stakeholders are equitable partners—as opposed to research subjects—who leverage their lived experience and expertise to influence research to be more patient centered, relevant, and useful. Their early and continued involvement throughout a study can lead to greater use and uptake of research results by patients and stakeholders within the healthcare community.

PCORI has underscored 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. PCORI has published multiple peer-reviewed articles on the importance and value of patient and stakeholder engagement, which can be found here.

There are a variety of approaches to engaging patient and stakeholder partners in research. Stakeholders can serve on ad hoc working groups to prioritize unanswered research questions or develop dissemination strategies for study results. They can also have more sustained involvement in a study, providing their input and guidance by serving on an advisory committee or a co-investigator. Much like the approaches, there is also variability with respect to level or intensity in which partners are engaged.

Engagement often occurs along a continuum ranging from stakeholder input, to consultation, to collaboration or shared leadership. Stakeholder input is primarily unidirectional, where partners share their perspectives or feedback on a particular topic in a singular forum. Collaboration or shared leadership reflects the bidirectional flow of information, decision-making authority, and leadership on a continued basis. For more information on the types of activities patients and stakeholders conduct on PCORI-funded projects, click here.

An Engagement Plan: What Is It and Why is One Important?

Engagement in PCORI-funded studies can take many forms. Effective engagement of patients and stakeholders in research requires a well-thought-out engagement plan. Thus, all applications for PCORI research funding must include an outline of how stakeholder partners will be involved in study preparation, conduct, and the dissemination of findings within its Engagement Plan.

The Engagement Plan within the research application is evaluated throughout the official merit review process to assess the patient-centeredness and engagement elements of the proposed research study. The Engagement Plan portion of an application is the conceptualization of how the research team will be responsive to Criterion 6—Patient and stakeholder engagement—under PCORI's Merit Review Criteria for funding.

Following the receipt of a funding contract, awardees will submit a more robust engagement design using PCORI's Updated Engagement Plan template. As engagement generally varies with the nature of the research, we encourage applicants to propose creative engagement ideas that will meaningfully involve patients and stakeholders with a vested interest in the healthcare topic.

Additionally, PCORI created the Engagement Rubric to support researchers as they develop their Engagement Plan for a PCOR study. PCORI’s Engagement Rubric was purposefully not prescriptive about what engagement activities should occur at what stages so that awardees could explore what works best for their study and research question. This was a conscious decision given the newness of PCORI’s approach and lack of an explicit evidence base or research model for patient-centered and stakeholder engaged comparative effectiveness research.

How Can Researchers Engage Stakeholders in Research?

PCORI's mandate requires that patients and stakeholders be involved in the health research process, which is what we refer to as research engagement. While it sounds easy in theory, practicing engagement, while upholding the rigor of scientific inquiry, requires considerable planning and thoughtfulness.

As more researchers are conducting PCOR/CER, we are also learning about various approaches and working to synthesize the lessons learned to help researchers step into, and succeed, with engaging patients and stakeholders in their work.

Often the biggest challenge to engagement is a lack of clarity about what it is and how do put it into practice. The best place to start is with why, meaning, why are you seeking the voices of patients and stakeholders? If the answer is to help increase the usefulness, usability and accessibility of your study’s findings, then you can start answering the other important questions concerning who, what, and how?

• Who are the best people to push my team beyond our current thinking? Who can provide valuable insights or different perspectives that enhance our research questions, design, or recruitment plan? Who are the players who can help me get the findings into the hands of the people who can use them?
• What does my research team need to do to establish and foster these relationships? What needs to occur to align the right people with the study, in a manner that will keep them involved and energized?
• How do we organize the engagement activities so that these are beneficial and manageable within the constraints of cost, time, and individual capacity?

PCORI has developed resources for researchers that can help research teams answer these critical engagement questions.

Where Is the "Science of Engagement" Headed?

PCORI's practice of engagement has become a real-time laboratory for innovation that can offer a rich set of experiences and data to the evidence base. PCORI can now leverage the work of its awardees to much more robustly answer some very timely questions, like:

• How specifically is engagement influencing the course of our studies, our portfolio, and the individuals who take part in the work?
• If patient and stakeholder engagement changes the course of studies, how did that happen? How can that be replicated? How can it be sustained?
• How do we demonstrate the value of patient and stakeholder engagement in research?

PCORI will work to answer these important questions surrounding the science of patient and stakeholder engagement in the coming years through researcher and partner interviews as well as portfolio analyses.

Hear about how patient and stakeholder engagement leads to more useful research results, and how PCORI’s efforts have influenced the culture of research.

Posted: October 30, 2018