canadian heart function alliance network: patient partnership platform
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 Holders, 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 is patient-driven, spanning the lifecycle of patients from children to elderly, from rural to urban, across geographic and socio-economic barriers. It includes innovative, research projects within an integrated program and leverages clinical expertise, industry partnerships and access to large cohort data. CHF Alliance has already attracted matching funds of over $27 million to compliment the investment from CIHR and Heart and Stroke Canada (HS). This will enable the creation of platforms to promote patient engagement, to advance more effective models of care, to support Digital Health initiatives, to integrate remote monitoring, to utilize big data and advanced analytics such as artificial intelligence (AI), to conduct pragmatic trials, and to promote more effective knowledge mobilization so that the Alliance will be impactful to improve quality of life (QOL), reduce HF related morbidity and mortality and develop the next generation of HF researchers across Canada.
Although advances in our understanding of causation, and therapies for HF have improved, patient outcomes and QOL remain poor. Early diagnosis and patient empowerment are inadequate, and low rates of implementation of proven therapies and poor access to care are barriers to improving outcomes. Better understanding of the factors that leads to progression from risk factors for HF to death will benefit all Canadians. While the majority (>70%) of Canadians live within or close to urban centres, only 10% of Canadians have access to specialized centres having heart function clinics that offer high quality care, and many Canadians live in rural and remote areas with even poorer access. Interventions which can be applied at various stages of the disease from childhood to the very elderly need to be developed and evaluated. To address these challenges, the CHF Alliance Network was developed, from its inception, in partnership with people with lived experience. The CHF Alliance comprises 133 participants (including 26 early career investigators), 30 collaborators, 11 patient and family partners, 14 industry partners, and will have over 8 trainees and 11 patients or caregivers. CHF Alliance is organized around 4 national Research Teams, 2 Collaborative Research Projects/Programs, 7 Cross Cutting Themes and 5 supporting Platforms.
plain language summary
The Canadian Heart Function Alliance Network is a new Canada-wide network that brings Canadian researchers and clinical experts in heart failure, together with patients, caregivers, Indigenous Elders and Knowledge Holders, government, policymakers, knowledge users, not-for-profit organizations, health care providers, academic institutions, and industry partners. Through this collaboration, we improve the prediction, prevention, diagnosis, and management of heart failure. The Network was developed as a result of the challenges faced by people living with heart failure. The three main challenges include delayed diagnosis of heart failure, lack of equitable use of proven therapies, and the continued difficulties that many people face when seeking to access heart failure care. While more than 70% of Canadians live within or close to urban centres, only 10% of Canadians have access to specialized centres, including heart function clinics that offer high quality care. Likewise, many Canadians live in rural and remote areas with even greater barriers to basic healthcare. These are big challenges, but we have an opportunity to make change through this national Alliance.
The CHF Alliance currently comprises 133 researchers, over 38 patient and caregiver partners, 14 Indigenous partners, 26 early career investigators, and 30 other partners from 8 provinces and 1 territory and 28 hospital centres working on 23 projects. Collectively, we will work on building this network and creating solutions together. We worked with people with lived experience of heart failure and caregivers to determine patient priorities. These include receipt of rapid and accurate diagnosis; improving access to and equity of care; self-management and empowerment; improving access to reliable information; lifestyle issues and mental health; and virtual care and innovative interventions. These priorities are infused across all aspects of the network. To achieve these goals, the Alliance Network is organized around 4 national Research Teams, 2 Collaborative Research Projects/Programs, 7 Cross Cutting Themes and 5 supporting Platforms - it truly is inclusive and extensive!
Patient engagement is a core focus of the Alliance. The Network is implementing strategies for meaningful patient and family engagement, with a focus on patient-driven research and advancing the science of patient engagement. Patients and caregivers have played a key role in the co-design of our Patient Partnership Platform. But this is just the beginning and we are looking forward to ongoing partnership as the network continues to grow. Our goal is to advance patient engagement in research and empower patients in heart failure care. To achieve this, we propose to: 1) Expand HF research co-production through meaningful patient engagement; 2) Advance POR methods and study the impact of patient engagement and empowerment; 3) Promote and support patient-driven research; and 4) Promote Indigenous patient engagement and empowerment. We will achieve this by building partnerships and supporting engagement across the whole network. The Network’s main priorities include developing policies and processes that will support engagement, as well as fostering linkages across the whole network.
We will be sharing more updates as we go, however, if you have questions or want more information, please do not hesitate to reach out to Davina Banner-Lukaris (Scientific Lead) at davina.banner-lukaris@unbc.ca or Sylvain Bédard (Patient Lead) at sylvain.bedard@cepp.ca
Knowledge Translation Outputs
Introducing the Canadian Heart Function Alliance Network’s Patient Partnership Platform
Le Réseau de l'Alliance Canadienne de la Fonction Cardiaque
For the CHF Alliance Road mapping Summary (click here)
