Patient Partners

Lived-Experience Experts

Patients bring their direct experience and fresh perspectives to research. By involving them in health research, CANet is empowering patients to directly impact our Network initiatives surrounding cardiac arrhythmia care.

We believe that patients should play a key role in developing research agendas and conducting research. The Network involves patients in all aspects of decision-making, operations, and participation in research programs.

CANet maintains patient engagement across all network activities:

A patient as the Chair of the Board of Directors
Patients as active members on all committees (Board of Directors, Management, Research)
Patients defining the merit of all research proposals
Patients leading or co-leading every major research project

21 Patients are involved in governance activities across the Network
27 Patients are leading or co-leading research activities across funded projects
1,092 Patients and caregivers have participated in all events to date

Patient partners share their valuable insights and first-hand knowledge of how arrhythmia and arrhythmia care impacts patients and their families. Across the Network, our patient partners are co-leads on research projects, and volunteer on all committees including the Patient Advisory Committee (PAC) and Board of Directors.

CANet’s patient partners are involved in and share their expertise in the following areas:

Committees – by sharing their knowledge and personal experiences
Communications – by sharing their care experiences with other Patient Partners, our Network Investigators, and Trainees (Highly Qualified Personnel)
Events – by participating in the development of our events including our Expert Knowledge Exchange (EKE) which are aimed at sharing information across our Network and to the public

There are many opportunities to participate in our Network and patient partners are matched with their interest, experience, and availability.

Patient Advisory Council

Our Patient Advisory Council (PAC) consists of 10 patients, caregivers, or family members from across Canada.

All have been affected by cardiac arrhythmia and have significant experience in the healthcare system. Members of our PAC share their knowledge of living with arrhythmia and participate in the majority of our Networks’ activities and initiatives.

Each CANet-funded project and activity either has a PAC member or an arrhythmia patient as a fully integrated member of the research team.

Participate

Research leads to new discoveries. Participate today and be an agent of change.

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Meet Hugh

In his experience, CANet Patient Partner Hugh Winsor believes that patients need to combine their own lived experiences with a wider understanding of the cardiology and science involved in the proposed investigation.

Only then can patients fairly assess the potential patient benefit from any proposed study.

Meet Tim

CANet Patient Partner Tim Westhaver lives with an inherited heart disease called hypertrophic cardiomyopathy (HCM).

“Don’t live your life by other people’s standards. Live it by yours.”

Meet Danaka

CANet HQP and Patient Partner Danaka Porter, recalls her history with supraventricular tachycardia (SVT).

“If you don’t like something but you have the power to fix it, it’s on you. This is me trying to fix it.”

Patient Impact Report

Click here to view our Patient Impact Report

“Patient involvement at CANet is authentic at all levels of the organization — from governance to operations to actual field and on-ground research.”

– Mary Runte, Chair
Patient Advisory Committee (PAC)