The Canadian Heart Function Alliance (CHF Alliance) Network brings the top Canadian researchers and clinical experts in heart failure (HF) together with patients, caregivers, Indigenous Elders and Knowledge Keepers, government, policymakers, knowledge users, not-for-profit organizations, health care providers, academic institutions, and industry partners to improve the prediction, prevention, diagnosis, and management of HF. The Alliance’s priorities are patient-driven and span the lifecycle. It includes innovative research projects within an integrated program and leverages clinical expertise, industry partnerships, and access to large cohorts. The Alliance activities will support the development of platforms to foster digital health, pragmatic clinical trials, artificial intelligence (AI) and advanced data analytics, training, patient engagement and knowledge mobilization that will sustain research and develop the next generation of HF researchers across Canada.
The CHF Alliance recognizes the central importance of engaging those with lived and living experience of HF, including patient partners, caregivers, and other knowledge users. By adopting Patient-Oriented Research (POR) principles, practices, and methods, the CHF Alliance Patient Engagement and Empower Platform will spearhead and support initiatives that accelerate scientific discovery on the role and impact of patients in research and in their own HF care.
Family: Family members, significant others, and meaningful personal connections of patients
Patient/Person with Lived Experience (PWLE): An individual with personal experience of a health issue contexts. Patient is considered an overarching term that includes informal caregivers, such as family and friends.
Patient Engagement: Meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific, affected communities.
Patient-Oriented Research: A continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices.
Patients as Partners: Patients who are meaningfully engaged in the research team, and like other research team members, contribute unique expertise and experiential knowledge.
Knowledge Holder: Indigenous persons who are engaged in identifying, maintaining, protecting, reclaiming, and supporting culturally grounded knowledge traditions and practices. This is a special and important role within Indigenous communities.
The CHF Alliance Executive Council holds the overall responsibility for the governance and management of the CHF Alliance and must act in accordance with the program guidelines and relevant Funding Agreements. The Executive Council is the highest decision-making body and serves to provide a framework for CHF Alliance operations.
The CHF Alliance has created the Patient Engagement and Empowerment Platform, which will review and report on its mandate to the Executive Council on an annual basis. This platform brings together the researchers of the network in partnership with patients, along with theme co-leads and partners involved in the various research projects/studies of the CHF Alliance. The Patient Engagement and Empowerment Platform is co-led by a patient partner and researcher, both of whom also sit on the Executive Council. This platform is responsible for the deployment of the Patient Partnership strategy within the CHF Alliance.
The CHF Alliance Patient Engagement and Empowerment Platform has established the mandate to:
The membership of the Patient Engagement and Empowerment Platform must reflect the interests, philosophy, and strategic direction of the various stakeholders involved in the network. Members of the platforms will come from across Canada and comprise a diversity of patients, caregivers, and/or family members who have the experience of living with or caring for an individual HF. It shall be co-led by a patient and scientific lead. Additional members may be added to the platform as needed. A detailed description of member roles and responsibilities is outlined in Appendix A.
The Patient Engagement and Empowerment Platform is accountable to the CHF Alliance Executive Council and will operate under these terms of reference.
The Patient Engagement and Empowerment Platform will be co-led by one patient partner and one researcher that will serve for a term of five years. Any changes to terms of membership must be approved by the platform co-leads and the CHF Alliance Executive Council.
CHFA Patient Engagement and Empowerment Platform Remuneration and Travel Reimbursement Policy
This remuneration policy covers various activities in connection with the CHF Alliance only (i.e., meetings, teleconferences, committee participation, or any other event). The remuneration details below do not include remuneration in research projects, in which patient partners may be involved. Unless otherwise agreed upon by the CHF Alliance, it is the responsibility of the project’s principal investigator to allocate remuneration for the Partner’s involvement based on a mutual understanding of the Partner’s obligations to the project and the principal investigator’s needs.
Theme Co-Leads
The CHF Alliance will remunerate agreed activities of the Patient Co-Lead through a stipend negotiated between the Platform Lead and CHF Alliance Principal Investigator Co-Leads. Special remuneration rates may be negotiated. Remunerated activities must be approved or based on a CHF Alliance invitation. Alternative remuneration may be negotiated but must be in accordance with allowable expenses.
Patient Partners
The CHF Alliance will remunerate the activities of each patient partner at a rate of $50 per hour. Special remuneration rates may be negotiated. Remunerated activities must be approved or based on a CHF Alliance invitation (from a Theme Manager or the Patient Engagement and Empowerment Platform). Alternative remuneration may be negotiated but must be in accordance with allowable expenses.
Activities to be remunerated by the CHF Alliance/ Patient Engagement and Empowerment Platform:
Activities that are not remunerated by the CHF Alliance:
For any activity approved by the CHF Alliance involving an entire day of participation, the maximum billing per patient partner or Theme Co-Lead is $400 per day.
Any remuneration related to an activity involving the CHF Alliance must be approved by the Patient Engagement and Empowerment Platform prior to the involvement of the patient partner or Theme Co-Lead. Remuneration will apply if the patient partner or Theme Co-Lead was specifically invited to participate by the CHF Alliance.
New Patient Partner Remuneration Set-Up
Register for Direct Deposit Payment by sending the complete form, along with a voided cheque, to the Patient Engagement and Empowerment Platform Engagement Coordinator.
Activity Remuneration Procedure
The Patient Engagement and Empowerment Platform Engagement Coordinator will send a prepared invoice on a quarterly basis (every three months) for the patient partner’s review for participation in a CHF Alliance activity for the patient’s review and approval. A template for this invoice can be found on page 9 of this document.
As for Travel Expenses Claim for the expenses incurred in connection with the event, you don’t have to wait until the next quarterly (3 months), you can submit your expenses claim right after the event. You can SCAN all the receipt to the Engagement Coordinator (and keep the originals in a safe place). If you don’t have access to a scanner, please set up a time to call the Engagement Coordinator who will give you the information you need to submit your claim by regular mail. A template for the Travel Expenses Claim can be found on page 10 of this document.
Once approved within the stipulated deadline, the invoice and/or the Travel Expenses Claim will be submitted to the Montreal Heart Institute and remuneration will be sent according to the Patients preferred method of payment (direct deposit or cheque).
These Terms of Reference for the Patient Engagement and Empowerment Platform are to be reviewed and can be amended on an annual basis.
