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 :

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. 

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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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Research activities

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The patient platform has initiated 4 research studies, all of which are driven by or partnered with PWLE. 

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• Study 1: Masterclass Pilot Study – As part of our Masterclass, Dr. Jillianne Code is examining patient pedagogies and is conducting a fulsome analysis of the Masterclass curriculum and impacts. This study will provide much needed direction to the Platform educational programs and will also inform broader patient-oriented research initiatives. This study will be published and will also inform a formalized curriculum for advanced patient-oriented research training.

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• Study 2: Intimacy and Partnership in Heart Failure – Dr. Heather Lannon is a person with lived experience as a caregiver, and researcher with expertise in social science. She will be leading a qualitative study exploring relational intimacy and how the heart failure journey impacts upon intimate relationships. This will address a gap in the knowledge and will bring together insights from people with lived experience of heart failure and those around them. This study will be published, and key insights share during conference presentations and Platform events.

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• Study 3: Road Mapping Study – Dr. Davina Banner and Marc Bains co-lead this study to identify priorities and supports for Platform growth. In this study, they have conducted a priority setting workshop to directly inform areas of development for the Platform, along with gathering data on how the Platform can advance patient-oriented research and foster an activated and supported community of PWLE. They have conducted their data collection and are now analyzing and reporting the data. This study will be published and will be used to guide the planning for years 3-5 as well as for advancing patient oriented research across the Country.

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• Study 4: Matching study - The team has worked with a trainee to explore mechanisms to support patient partner and research team matching. This was supported to offer direct input into our planning activities.

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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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If you are a researcher looking for patient partners, you can complete the intake form and send it to Shayna at Dolan: 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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