Making Agency Visible: Patient Perspectives on Engagement in Cardiovascular Research

Objectives: To examine how cardiovascular patients perceive and enact agency in research partnerships, including decision-making, communication, health literacy, and sustained engagement.Methods: This qualitative study involved semi-structured interviews with 14 patient partners who participated in a national Masterclass on cardiovascular research. The Masterclass was designed to strengthen patient capacity for research involvement through education, mentorship, and collaborative activities. Interview transcripts were analyzed thematically, guided by the Patient Agency in Research (PAIR) framework, which conceptualizes agency as intentional, self-reflective action expressed through individual, proxy, and collective modes.Results: Participants reported increased confidence, health research knowledge, and intentionality in their roles as research partners. They described navigating power imbalances, confronting tokenism, and advocating for more inclusive and responsive research cultures. Key findings included self-directed learning, empowerment, psychological safety, and the critical role of trust, respect, and transparent communication in fostering meaningful collaboration. Despite challenges, participants emphasized the value of structured support in helping them move from passive participants to active contributors.Conclusion: Agency is a core element of meaningful and sustained patient engagement in research. However, it does not arise automatically—it must be deliberately cultivated through educational interventions, inclusive practices, and ongoing relational support.Practice implications: Programs like the Masterclass can activate and strengthen patient agency, enabling individuals with lived experience to shape research in ways that are personally meaningful and scientifically impactful. By investing in patient capacity and fostering equitable research environments, institutions can move engagement beyond tokenism and toward partnerships that reshape the purpose—and the practice—of health research.