PACE
Patient Agency in Cardiovascular Education
PACE is a pilot study examining how educational interventions can promote agency in patients living with heart failure. Grounded in theoretical work on patient agency and lived experience as a heart transplant recipient, the project develops and tests patient-centred approaches to heart failure self-management and advocacy — designed with patients, not just for them.
Supported By
Guiding Questions
Research Questions
- 1
What educational approaches best support the development of patient agency in heart failure self-management?
- 2
How do patients describe and experience their own agency within the healthcare system?
- 3
What conditions enable patients to move from passive recipients of care to active knowledge producers and advocates?
Approach
Methods Overview
Qualitative pilot study with semi-structured interviews, participatory co-design of educational resources with a patient advisory panel, and iterative testing of agency-promoting interventions in clinical and community settings.
Outputs
Publications
2026
Recruitment Messaging and Patient Agency in Clinical Research—Beyond Enrollment
Code, J.
JAMA Network Open
DOI →2025
Agency in action: Engaging patient participation in research
Code, J., Lannon, H., & Lutrin, A.
Patient Education and Counseling, 141, 109353
DOI →2024
At the heart of resilience: Empowering women's agency in navigating cardiovascular disease
Code, J.
CJC Open, 6(2), 473–484
DOI →
Explore the full research program
All active and completed projects, research statement, and the ALIVE Lab.
