Agency in action: Engaging patient participation in research

Abstract

Objectives: To examine how patients with cardiovascular disease perceive and enact agency in research partnerships through decision-making, communication, health literacy, and sustained engagement.

Methods: This qualitative study involved semi-structured interviews with 11 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, research knowledge, and intentionality in their roles. They described navigating power imbalances, countering tokenism, and advocating for inclusive research cultures. Key findings included self-directed learning, empowerment, psychological safety, and the importance of trust and transparent communication.

Conclusion: Agency is a core element of meaningful patient engagement but must be deliberately cultivated through education, 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.

Keywords: Cardiovascular research; Health literacy; Patient agency; Patient engagement; Qualitative study.