Patient Engagement Is Critical to Producing Useful, Relevant Research

Since our founding nearly 10 years ago, PCORI has emphasized the importance of engagement—the meaningful involvement of patients, caregivers, clinicians, insurers, and others across the healthcare community in every aspect of the research process—as a way to make health research more relevant, useful, and patient centered. Now we’re starting to show that engagement helps to ensure that research is better aligned with patient and clinician needs, according to a new PCORI analysis published in the March issue of Health Affairs.

Engagement is a key to achieving PCORI’s three strategic goals—making research more patient centered, increasing the body of useful information to guide health care, and speeding the uptake and use of research findings. Our ultimate objective is to align research efforts with real-world needs, concerns and questions of patients, caregivers, clinicians, payers, and policy makers. (See box below: Ensuring the Patient’s Voice Is Heard)

PCORI-funded research offers an opportunity to examine how engagement can contribute to studies, and it also provides examples for researchers to draw from.

Spotlight on Our Research

Several articles from PCORI-funded researchers are featured in the March issue of Health Affairs, which focuses on patients as health consumers. The articles include:

• Machine-Based Expert Recommendations and Insurance Choices Among Medicare Part D Enrollees
• Technology-Enabled Consumer Engagement: Promising Practices at Four Health Care Delivery Organizations
• Barriers and Facilitators to Community-Based Participatory Mental Health Care Research for Racial and Ethnic Minorities
• Understanding What Information Is Valued by Research Participants, and Why

We collected and thematically analyzed information from 126 peer-reviewed journal articles from PCORI-funded research studies that included descriptions of each research team’s experiences with partner engagement. The authors of these articles noted:

• Patients and caregivers served as active partners and prominent contributors in many of the research projects.
• Engagement contributed to all aspects of research, including determining the study design, selecting study outcomes, tailoring interventions to meet patient needs and preferences, enrolling participants, and disseminating findings.
• Engagement provided valuable contributions to research feasibility, acceptability, rigor, and relevance.

A few projects said they could not implement partner recommendations because of study constraints or that engagement introduced trade-offs among feasibility, acceptability, relevance, and rigor, such as using a measure that has not been validated to assess an outcome highly valued by patients. Engagement adds to ever-present, real-world research circumstances, including time, budget, and funder requirements. With patients and other stakeholders involved, conversations about research design priorities can address both technical issues and broader issues of what research is valued and by whom.

Overall, the findings suggest we are seeing the beginning of a shift from research that is solely investigator-driven to a model that fully collaborates with patients and other stakeholders. To maintain momentum, research funders and institutions need to establish engagement policies and allocate resources to support research that is more responsive to end users’ needs. PCORI will continue to develop or enhance resources like the engagement rubric, templates for planning engagement, and trainings, as well as to make substantial investments in additional research to identify optimal engagement practices.  

Both from this study and our ongoing efforts, we know that engaging stakeholders as true research partners is hard work that requires commitment and resources. But these early indications suggest that investments in engaged research can contribute to more useful and relevant evidence to support patient, clinician, and other stakeholder decisions.

Ensuring the Patient's Voice is Heard

David White, Chair of PCORI’s Advisory Panel on Patient Engagement

Embracing patients as full partners in research serves as PCORI’s north star, a focus clearly illustrated in the March Health Affairs article suggesting how this approach can make the studies PCORI funds more relevant and useful to patients and clinicians. As the article indicates, from research design through dissemination of results, we are ensuring that the patient’s voice is heard.

It’s clear to many of us that a shift from investigator-driven scientific inquiry to a more patient-centered collaborative approach is beginning, but more needs to be done. Helping researchers alter their focus from patients purely as study participants—or, as we used to be known, subjects—to patients as partners is important. One possible outcome of this trend is a growing number of patient investigators who will lead studies on their own or in collaboration with researchers. That could be the ultimate in ensuring patient-centered research.

Where to start in our efforts to show clinical researchers the advantages of partnering with patients? Medical schools would be a perfect place. PCORI could enlist ambassadors and others to talk to medical school students pursuing careers in research, emphasizing the need to work diligently to involve more patients throughout their working lives.

Addressing resource investment is another important issue. We need to increase the time, effort and funding devoted to supporting this shift to nurture—and sustain—a vital partnership.

Finally, a community-based approach is crucial. Researchers should consider establishing long-term relationships by visiting health fairs and local gatherings and by reaching out to community and faith-based groups to listen to their health concerns. Such conversations serve as a natural springboard to discussions about participating in studies.

There is a science to engaging with patients, but also an art. That art takes the form of community-specific cultural elements. Every population is different. Every community is different. The first touch of health research has to be culturally relevant. That’s the optimal place to start.