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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. 

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. 

Goals and objectives

To advance patient engagement in research and patient empowerment in heart failure, the theme :

  1. Cultivates and expands co-production of heart failure research through meaningful patient engagement and empowerment in all network activities;

  2. Advances POR methodologies to study the impact of patient engagement and empowerment in heart failure research and care;

  3. Promotes and supports patient-driven research; 

  4. Promotes Indigenous patient engagement and empowerment. 

Current and future activities 

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.   

Resources 

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

Patient Partner Terms of Reference.

HeartLife Hub: https://hub.heartlife.ca/ 

EMPOWER: the Patient Engagement and Empowerment Team's newsletter.

Video series for researchers:

Module 1: Patient Oriented Research

Module 2: Engaging Patient Partners

Module 3: Ethical Considerations

Module 4: Equity, Diversity and Inclusion

Click here to access the newsletters and the video series. 

Team Leads

Dr. Davina Banner-Lukaris
University of Northern British Columbia 

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Marc Bains
HeartLife

Patient Engagement team members

Dr. Jillianne Code
HeartLife

Caroline Wong
CEPPP

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Shayna Dolan
University of Northern British Columbia

Patient engagement & empowerment team members

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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