Linked by the heart
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 from HeartLife, Vancouver, BC, Canada. The Patient Engagement and Empowerment Platform was founded on patient-driven priorities and developed in partnership with people with lived experience of heart failure.
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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.
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Goals and objectives
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To advance patient engagement in research and patient empowerment in heart failure, the theme :
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Cultivates and expands co-production of heart failure research through meaningful patient engagement and empowerment in all network activities;
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Advances POR methodologies to study the impact of patient engagement and empowerment in heart failure research and care;
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Promotes and supports patient-driven research;
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Promotes Indigenous patient engagement and empowerment.
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Current and future activities
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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, workshops, videos for researchers, 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.
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Resources
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If you are a person with lived experience of heart failure and would like more information about patient engagement and empowerment, please contact Shayna Dolan at: Shayna.Dolan@unbc.ca
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Patient Partner Terms of Reference.
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HeartLife Hub: https://hub.heartlife.ca/
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EMPOWER: the Patient Engagement and Empowerment Team's newsletter.
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Video series for researchers:
Module 1: Patient Oriented Research
Module 2: Engaging Patient Partners
Module 3: Ethical Considerations
Module 4: Equity, Diversity and Inclusion
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Click here to access the newsletters and the video series.
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Team Leads
Dr. Davina Banner-Lukaris
University of Northern British Columbia
Marc Bains
HeartLife
Patient Engagement team members
Dr. Jillianne Code
HeartLife
Caroline Wong
CEPPP
Shayna Dolan
University of Northern British Columbia
Patient engagement & empowerment team members
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Dr. Davina Banner-Lukaris - Professor, School of Nursing, University of Northern British Columbia
Dr. Jillianne Code – Associate Professor, University of British Columbia, Co-Founder, HeartLife Foundation
Marc Bains – CHF Alliance Co-Lead, Co-Founder, HeartLife Foundation
Shayna Dolan – Research Manager, Patient Engagement & Empowerment Platform Coordinator, School of Nursing, University of Northern British Columbia
Aiden Winkel – Research Assistant, School of Nursing, University of Northern British Columbia
Ashley-Ann Marcotte – Research Associate, School of Nursing, University of Northern British Columbia
Dr. Heather Lannon – Post-Doctoral Fellow, University of British Columbia and University of Northern British Columbia
Jenny Milne - Patient Partner, Patient Engagement & Empowerment Platform Leadership Committee
Diane Morgan - Patient Partner, Patient Engagement & Empowerment Platform Leadership Committee
Jeanette Smith - Patient Partner, Patient Engagement & Empowerment Platform Leadership Committee
Wayne Sandvik - Patient Partner, Patient Engagement & Empowerment Platform Leadership Committee
Caroline Wong - Executive Director, Centre of Excellence on Partnership with Patients and the Public
Reference
1. Banner, D., Bains, M., Carroll, S., Kandola, D. K., Rolfe, D. E., Wong, C., & Graham, I. D. (2019). Patient and public engagement in integrated knowledge translation research: are we there yet? Research involvement and engagement, 5(1), 1-14
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