The CHF Alliance is patient-driven, spanning the lifecycle of patients from children to elderly, from rural to urban, & across geographic and socio-economic barriers.
The Patient Engagement & Empowerment Platform was founded on patient-driven priorities & developed in partnership with those with lived experience of HF
Members of the Patient Engagement and Empowerment Platform are eligible for remuneration and reimbursement for their services as per the CHF Alliance Patient platform Remuneration and Reimbursement Policy and will be reimbursed for actual and reasonable expenses necessarily incurred by the member to participate in pre-authorized activities led by the CHF Alliance.
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To advance patient engagement in research and patient empowerment in heart failure, the theme :
Cultivates and expands co-production of heart failure research through meaningful patient engagement and empowerment in all network activities;
Advances POR methodologies to study the impact of patient engagement and empowerment in heart failure research and care;
Promotes and supports patient-driven research;
Promotes Indigenous patient engagement and empowerment.
This theme is led by Dr. Davina Banner-Lukaris of the University of Northern British Columbia, Prince George, BC, Canada, and by Marc Bains of the HeartLife Foundation. The Patient Engagement and Empowerment Platform was founded on patient-driven priorities and developed in partnership with people with lived experience of heart failure.
The meaningful engagement and empowerment of patients, in addition to the incorporation of patient-reported outcomes and priorities, is recognized as a key mechanism to increase the relevance, impact, and efficiency of research and to improve patient outcomes (1). In collaboration with the patient partners of the HeartLife Foundation and the CEPPP, the CHF Alliance spearheads patient-oriented research (POR) initiatives by implementing evidence-based structures and processes to accelerate scientific knowledge about the role and impact of patients in research and in their heart failure care.
Download the terms of reference and Toolkit here.
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, and 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.