Why Engagement in Research Matters

Engaged communities drive faster, more meaningful research

Meaningful Patient and Partner Engagement

Patient-centered research focuses on questions and outcomes that reflect what matters to patients, caregivers, and those in the healthcare community, including clinicians and clinic staff, insurers, policymakers, and others.

Research powered by PCORnet® incorporates elements that contribute to meaningful engagement and research results, including:

  • Involvement from patients, caregivers, and the broader healthcare community: PCORnet investigators form partnerships with patients, caregivers, and others to involve them meaningfully, beyond just being research participants.
  • Focus on patient needs and preferences: PCORnet® Studies are guided by the health outcomes that are important to patients and the people who care for them. In addition to patients and caregivers, other community partners may provide key insights, depending on the study.
  • Focus on informing decision making: The goal of patient-centered research is to provide patients, caregivers, and the broader healthcare community with relevant information to help them make informed healthcare decisions that reflect their needs and preferences.

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

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The PCORnet® Common Engagement Model (PCORnet® CEM) outlines expectations for engagement in research powered by PCORnet®.

For example, patients and those involved in their care are trusted partners in every PCORnet® Study, engaging as meaningful collaborators with health professionals and researchers throughout the research project — from identification of the research questions through the design, implementation, analysis, and dissemination of the results.

Visit this page to learn more about how the PCORnet® CEM supports patient-centeredness and helps research teams consider approaches that optimally engage patients and other partners in all phases of the research.

From the Patient Perspective

Engaging patients and caregivers in the planning of the research project enables collaboration in the selection of research questions that are relevant and important to the 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.
  • Help to communicate about  studies and their results to communities who stand to benefit most.
  • Drive adoption of actionable findings and meaningful changes in clinical care.

From the Researcher Perspective

Patients, caregivers, and other partners provide important context that informs understanding of what it is like to have and receive health care for an illness or condition.

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.