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JillianneCode
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. Brain-HF applies this method to one of the most complex and underexplored frontiers in cardiovascular medicine.

Guiding Questions

Research Questions

  1. 1

    What are the most important unanswered questions at the intersection of brain and heart failure, as identified by patients, caregivers, and clinicians?

  2. 2

    How can patients and caregivers be genuinely centred in the priority-setting process?

  3. 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.

Outputs

Publications

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

See Also

Related Projects

PATIENT-FOCUS
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. It sits within the broader CFREF Brain-Heart Interconnectome initiative.

CFREF Brain-Heart Interconnectome$25,0002025–2026
PACE
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 Jillianne's theoretical work on patient agency and her 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

Explore the full research program

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

Research overview