Health

Brain-HF

Brain & Heart Failure Priority Setting Partnership

CFREF Brain-Heart Interconnectome$100,0002025–2026● Active

The Brain-HF Priority Setting Partnership identifies the most important unanswered questions about the brain–heart connection in heart failure, centering patient and caregiver voices throughout. Priority setting partnerships are a well-established method in health research for ensuring that research agendas reflect patient priorities rather than only researcher interests.

Supported By

In Collaboration With

Social Connections Lab

Brain Heart Interconnectome

HeartLife Foundation

Guiding Questions

Research Questions

1
What are the most important unanswered questions at the intersection of brain and heart failure, as identified by patients, caregivers, and clinicians?
2
How can patients and caregivers be genuinely centred in the priority-setting process?
3
What conditions support meaningful patient agency within structured research priority-setting?

Approach

Methods Overview

James Lind Alliance Priority Setting Partnership methodology: online survey to gather uncertain treatment questions from patients, caregivers, and clinicians; systematic review to check against existing evidence; consensus workshop to rank top priorities.

team note

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 →

All publications

Related Projects

Health

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.

CIHR CHF Alliance$25,0002023–2025

Health

PATIENT-FOCUS

Promoting Agency Through Innovative Education & Networked Teams

PATIENT-FOCUS facilitates outcomes and collaboration for understanding the brain–heart system. This project connects researchers, clinicians, and patients to promote agency in heart failure care — particularly through networked team models that position patients as active contributors to clinical research and care planning.

CFREF Brain-Heart Interconnectome$25,0002025–2026

Explore the full research program

All active and completed projects, research statement, and the ALIVE Lab.

Research overview