(Editor’s note: This post was co-authored by the following leaders: Greg Merritt, Ava Zebrick, Bill Stephen, Cheslie Johnson, Crispin Goytia, Jeffrey Ordway, Kristie Hill, Melissa Bronson, Nadine Zemon, Neely Williams, Shirley Stowe, and Tiffany Jones.)
Over the past year, as Patient Partner leaders for PCORnet®, we have been developing a manuscript chronicling the PCORnet journey toward patient partnership in research on a national scale. The manuscript, Patient Voices Leading Change: A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet, is featured in the February 2026 issue of Medical Care as part of a special supplement on PCORnet. The article describes PCORnet Network Partners’ commitment to building a patient-partnered research system rooted in trust, respect, co-learning, partnership, and transparency.
The Need for a Call to Action
A key observation from our work is that patient-partnered research thrives when it is careful, kind, and connected. By bringing together methodological rigor and excellence with empathy and genuine partnership, we can further strengthen what patient-partnered research can accomplish.
The “Careful, Kind, and Connected” Framework
The framework of “careful, kind, and connected” research emphasizes integrating high-quality research methods with compassion, respect, and meaningful partnership collaboration. Continuing to advance this vision requires ongoing commitment from all stakeholders—patients, caregivers, researchers, funders, and health systems. The goal is to move beyond limited consultation to enhance authentic partnership by sharing resources, decision-making authority, and building infrastructure that supports meaningful engagement across many different communities.
Opportunities for Action: Partner-Specific Next Steps
Outlined below are actionable steps for each stakeholder group to contribute to careful, kind, and connected patient-partnered research. These steps support the concept of team science, where researchers, patient partners, and clinical research networks each play essential and complementary roles.
For Patient Partners as Members of the Research Team or Governance
- Amplify your voice: Actively participate in meetings and share insights. Your lived expertise is invaluable. Providing specific examples of how research affects your daily life and those in your community strengthens the research process.
- Co-create knowledge: Take part in developing and co-creating new training programs with research partners. These programs should address research methods and ways to involve those with lived expertise.
- Build bridges to understanding: Work with research teams to develop “personalized” plain language summaries using effective prompts for you, not people “like you” (e.g., give an analogy for me to understand as a grandmother of 7 who loves to garden). This ensures research is accessible to both you and the broader community.
- Connect with others: Network with fellow patient partners and help encourage participation from individuals and groups who may not typically be involved in research.
For Researchers
- Deepen engagement: Involve patient partners at every stage of the research lifecycle. Include patient partners in grant writing, study conceptualization, team meetings, and making meetings and materials accessible. The Patient-Centered Outcomes Research Institute’s (PCORI’s) Foundational Expectations for Partnerships in Research offers additional resources and suggested approaches.
- Value contributions: Provide fair compensation for patient partners’ time and expertise, taking into account practical considerations that may affect participants differently.
- Embrace flexibility: Adapt research processes to support meaningful involvement. This means offering flexible meeting times, multiple communication options, and accommodation for caregiving responsibilities.
- Leverage emerging technologies: Consider leveraging the potential of emerging generative Artificial Intelligence (AI) technology to personalize communications to make studies more compassionate.
- Practice trauma-informed engagement: Recognize that some patients may have experienced difficult or stressful interactions within healthcare settings. Build trust through transparency, active listening, and respect for community knowledge and perspectives.
For Institutions
- Share best practices: Disseminate successful strategies throughout networks using peer learning, infographics, case studies, and formal publications.
- Build a culture of kindness: Develop and share best practices for compassionate research that serve as models for the wider community. Measure and report on kindness metrics alongside traditional research outcomes.
- Measure impact systematically: Create metrics to assess patient engagement quality and effectiveness, including quantitative measures (e.g., representation, compensation equity) and qualitative assessments (e.g., partner satisfaction, influence on decision-making).
- Address equity intentionally: Develop targeted strategies to engage communities historically excluded from research, focusing on reducing economic and educational barriers.
- Disseminate findings and strategies: Share research results and engagement strategies widely through webcasts, podcasts, infographics, public art and theater performances, as well as publications, conferences, and policy advocacy.
- Support infrastructure: Provide institutional support to facilitate patient partner engagement at all stages of the research process (e.g., support investigator time and effort for engagement activities, provide meeting space, and recognition of the importance of patient partnership).
Conclusion: Taking Action
If you are interested in advancing “careful, kind, and connected” patient-partnered research, we encourage you to contact the PCORnet® Front Door for information about public resources and services that support effective patient partnership.