Why Engagement in Research Matters

Engaged communities drive faster, more meaningful research

Meaningful Patient Engagement

Good studies consider all relevant evidence-and no evidence is more relevant than the community experience, especially from partners with lived experience, including:

  • Patients and Caregivers

  • Clinicians and Clinic Staff

  • Insurers

  • Policymakers

  • And others

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The Patient-Centered Outcomes Research Institute® (PCORI®) Foundational Expectations for Partnerships in Research

Patient-centered research helps ensure questions and outcomes that are meaningful and important to patients and caregivers.

This approach extends the concept of patient-centeredness from healthcare delivery to healthcare research.

  • Patient and caregiver input: PCORnet investigators form partnerships with patients and caregivers and involve them in ways beyond just being research participants.

  • Focus on patient preferences: PCORnet® Studies and other research powered by PCORnet® are guided by what patients are looking for.

  • Informing decision making: The goal of patient-centered research is to provide patients with easy-to-understand information to help them make informed healthcare decisions. In addition to patients and caregivers, other types of community partners may provide key insights, depending on the study.

Centering the voices of patients and other community partners ensures that research powered by PCORnet® is relevant to the lives of those whose health and everyday lives are affected.

A Common Model for Partner Engagement

The PCORnet® Common Engagement Model sets expectations for partner engagement at all levels of PCORnet - including PCORnet® Studies and other research powered by PCORnet®, the PCORnet® Clinical Research Networks, and PCORnet governance.

For example, patients and caregivers have a seat at the table in every PCORnet® Study, engaging as meaningful collaborators with health professionals and researchers, and PCORnet® Patient Partners have important roles in the governance of the network.

Learn more about how the PCORnet® CEM ensures that research powered by PCORnet® is patient-centered and considers approaches that optimally engage research partners for their input in study governance, design, implementation, analysis, and dissemination.

From the Patient Perspective

Partnering in research empowers patients and caregivers to set the research agenda, advocating for prioritization of questions that matter to their community.

Patients and caregivers also can:

        • Influence meaningful changes to study designs, giving these projects the best chance of success.

       

        • Show how their positive experiences with participating in and contributing to research lead to improved clinical answers.

       

        • Drive adoption of actionable findings and meaningful changes in clinical care.

       

        • Help to communicate about  studies and their results to communities who stand to benefit most.

       

       

 

From the Researcher Perspective

Health care professionals and research investigators know that patient partners offer important context and directly inform understanding of a condition, its effects, and the experience of illness and health care.

Likewise, patient partners can:

        • Identify processes or procedures that research participants may find too burdensome, allowing researchers to amend their protocols and potentially boost study enrollment.

       

        • Ensure study endpoints are meaningful, helping researchers deliver results that will improve the patient experience.

       

        • Mobilize patient groups for participation in clinical trials.

       

        • Serve as essential partners in helping to disseminate results in ways that are clear to communities.