Agency in action: Engaging patient participation in research

Area of Science:

• Cardiovascular disease research
• Patient engagement in health research
• Health equity

Background:

• Patient agency is crucial for meaningful involvement in research.
• Cardiovascular disease (CVD) patient perspectives on research participation are vital.
• Understanding how patients enact agency informs better research practices.

Purpose of the Study:

• To explore how patients with cardiovascular disease perceive and enact agency in research partnerships.
• To identify factors influencing patient agency in research decision-making, communication, and engagement.
• To assess the impact of a Masterclass program on patient agency in cardiovascular research.

Main Methods:

• Qualitative study using semi-structured interviews with 11 patient partners.
• Thematic analysis of interview transcripts guided by the Patient Agency in Research (PAIR) framework.
• Participants attended a national Masterclass designed to enhance research involvement capacity.

Main Results:

• Patients reported increased confidence, research knowledge, and intentionality.
• Participants navigated power dynamics, addressed tokenism, and advocated for inclusivity.
• Key findings included self-directed learning, empowerment, psychological safety, trust, and transparent communication.

Conclusions:

• Patient agency is essential for meaningful engagement and requires deliberate cultivation.
• Educational programs can strengthen patient agency, enabling impactful research contributions.
• Investing in patient capacity and equitable environments moves engagement beyond tokenism towards true partnerships.