Patient-Partnered Research: A Call to Action

Patient-Centered Research Gains Momentum with “Careful, Kind, and Connected” Framework

A new call to action, spearheaded by patient partners and researchers within the PCORnet® network, emphasizes the critical importance of empathy, trust, and collaboration in advancing patient-partnered research, with a forthcoming publication detailing the framework in the February 2026 issue of Medical Care. The initiative, born from a year-long collaborative effort, aims to move beyond superficial patient involvement toward genuine partnership and shared decision-making in research.

The Rise of Patient-Partnered Research

Over the past year, leaders representing a broad coalition of stakeholders – including patients, caregivers, and researchers – have been developing a blueprint for transforming research methodologies. This effort culminated in a manuscript, titled Patient Voices Leading Change: A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet, which details the PCORnet network’s commitment to a research system built on trust, respect, co-learning, partnership, and transparency.

According to a senior official involved in the project, a key finding emerged from their work: patient-partnered research flourishes when it prioritizes being “careful, kind, and connected.” This means integrating rigorous research methods with genuine empathy and a commitment to authentic partnership.

Defining the “Careful, Kind, and Connected” Approach

The “careful, kind, and connected” framework isn’t simply a philosophical ideal; it’s a practical approach to research design and implementation. It emphasizes the integration of high-quality methodologies with compassion, respect, and meaningful collaboration. Advocates stress that advancing this vision requires a sustained commitment from all stakeholders – patients, caregivers, researchers, funders, and health systems. The ultimate goal is to move beyond token consultation and foster authentic partnerships through resource sharing, collaborative decision-making, and infrastructure development that supports broad community engagement.

Actionable Steps for Each Stakeholder

The initiative outlines specific, actionable steps for each group to contribute to this more compassionate and collaborative research landscape. These steps are rooted in the principles of team science, recognizing the essential and complementary roles of researchers, patient partners, and clinical research networks.

For Patient Partners

Patient partners are encouraged to actively shape the research process through several key actions:

• Amplify your voice: Actively participate in meetings and share insights, recognizing that lived experience is invaluable. Providing concrete examples of how research impacts daily life strengthens the process.
• Co-create knowledge: Collaborate with research partners to develop new training programs that address research methods and effective ways to incorporate lived expertise.
• Build bridges to understanding: Work with research teams to create accessible, “personalized” plain language summaries, tailored to specific audiences – for example, using analogies relatable to a grandmother who enjoys gardening.
• Connect with others: Network with fellow patient partners and encourage participation from underrepresented individuals and groups.

For Researchers

Researchers are called upon to deepen patient engagement throughout the entire research lifecycle:

• Deepen engagement: Involve patient partners in all stages, from grant writing and study conceptualization to team meetings and ensuring accessibility of materials. The Patient-Centered Outcomes Research Institute’s (PCORI’s) Foundational Expectations for Partnerships in Research provides valuable guidance.
• Value contributions: Provide fair compensation for patient partners’ time and expertise, acknowledging the practical considerations that may affect their participation.
• Embrace flexibility: Adapt research processes to accommodate meaningful involvement, offering flexible meeting times, diverse communication options, and support for caregiving responsibilities.
• Leverage emerging technologies: Explore the potential of generative Artificial Intelligence (AI) to personalize communications and enhance compassion in study design.
• Practice trauma-informed engagement: Recognize that patients may have had negative experiences with healthcare and build trust through transparency, active listening, and respect for community perspectives.

For Institutions

Institutions play a crucial role in fostering a supportive environment for patient-partnered research:

• Share best practices: Disseminate successful strategies through peer learning, infographics, case studies, and publications.
• Build a culture of kindness: Develop and share best practices for compassionate research, measuring and reporting on “kindness metrics” alongside traditional research outcomes.
• Measure impact systematically: Create metrics to assess the quality and effectiveness of patient engagement, including both quantitative (representation, compensation equity) and qualitative (partner satisfaction, influence on decision-making) measures.
• Address equity intentionally: Develop targeted strategies to engage historically excluded communities, reducing economic and educational barriers to participation.
• Disseminate findings and strategies: Share research results and engagement strategies widely through webcasts, podcasts, public art, theater performances, publications, conferences, and policy advocacy.
• Support infrastructure: Provide institutional support for patient partner engagement, including investigator time, meeting space, and recognition of the value of patient partnership.

Looking Ahead: Taking Action

Those interested in advancing “careful, kind, and connected” patient-partnered research are encouraged to contact the PCORnet® Front Door for information about available resources and services. This initiative represents a significant step toward a more inclusive, equitable, and impactful research ecosystem, one where the voices of patients are not just heard, but truly integrated into the pursuit of knowledge.