Supporting Researchers to Foster Innovation

Start your Patient Engagement Now
Complete the Intake Forms Below

The CHFA is patient-driven and the partnerships with patients, caregivers, and the public are a vital and expected part of Alliance activities and research. This intake form is designed to provide an overview of the different key elements for developing partnerships with patients in health research, including exploring specific needs, preferences, and priorities. For the purposes of this document and accordance with our main funder (CIHR), the term ‘patient’ is used as an inclusive term to include those with lived experience, caregivers, family members, friends, and community members.

These intake forms includes guiding questions for patient engagement in Alliance governance or themes, as well as questions that can guide engagement planning for individual research projects. Once completed, the Patient Engagement and Empowerment Platform will use the information to support the recruitment and matching of patient partners, along with identifying specific support needs to optimize the partnership processes and outcomes. All parties are asked to complete the relevant sections.

Watch our Intro Video on Patient Oriented Research (POR)

Module 1: Patient Oriented Research

• What is Patient Oriented Research (POR)?
• Why including people with lived
experience is important.
• How to do this in a respectful, safe and mutually beneficial way.

Start Your Patient Engagement Now

Complete the Intake Forms Below

Training and Capacity Building

Coming soon

Patient Engagement and Empowerment Theme

The Patient Engagement and Empowerment team, in partnership with the HeartLife Foundation and CEPPP, conducts various activities and develops important helpful tools for the patient partner and researcher communities.

These include

virtual meetings to connect patient partners and researchers newsletters to keep the patient partners informed of the network activities
evaluation and research of CHF Alliance engagement activities implementation of strategic research projects to explore novel and innovative POR methods and practices in heart failure
development of a patient-led research seed grant program and training resources
development of a patient partner database
establishment of links and collaboration with the Indigenous Partnerships Committee

Importantly, the team also supports and contributes to the development of the HeartLife Hub, a web platform designed to keep patient partners engaged, by providing them with resources, support and information on patient engagement and empowerment.

Since the inception of this Network, persons with lived experience of HF, including caregivers, have been meaningfully engaged to ensure that the priorities, activities, and structures are designed to improve the lives of those at risk for and living with HF, optimize patient and health system outcomes, and better mobilize experiences to improve and advance HF research.

Patient co-leadership: Marc Bains, a person with lived experience and co-founder of HeartLife, a national patient-led organization on HF, is the co-lead of this Network. He and a growing group of patient and caregiver partners have been mobilized throughout the Network and at least one of patient or caregiver partner has been involved in the development of and will co-lead each of the five modules.

Patient engagement support: We are working with Patient-Oriented Research (POR) leaders (Banner, Bains, Bedard, L’Espérance, McGillon, Pomey, Wong) from across Canada, the Centre of Excellence on Partnership with Patients and the Public (CEPPP) of the UdeM, and notably with Mr. Sylvain Bédard, person with lived-experience of HF and expert in patient partnership, to support the mobilization of patients/caregiver partners in the development of the Network.

Patient Advisory Council: Patient and caregiver partners will be engaged in Network governance through a Patient Advisory Council. The Patient Advisory Council will contribute to the strategic priorities and development of the Network, including the major modules, themes, and projects. This Council will serve as an expert advisory council for all matters within the Network governance and where necessary, to partners of the Network, in collaboration with the Scientific Steering committee (SC). Marc Bains, patient co-lead of the Network, will chair this council and will represent the council and this collective voice on the SSC.
This Council will also serve to evaluate new/ongoing projects of the Network, to ensure continuous alignment with the needs/priorities of patients.

If you want to learn more about the CHF Alliance Research Teams and Themes please click here.

HeartLife Hub