Patient Engagement in Research
The needs and perspectives of those living with heart failure are integral to every step we take towards realizing our vision. Our patient partners serve as advisors and team members to develop and deliver on our network programming and research initiatives. We offer webinars, workshops, and events for people with lived experience (PWLE) to ensure they feel equipped and empowered as valued members of heart failure research teams.
Resources & Guides
In collaboration with TRANSFORM HF patient partners, we’ve created practical resources to support PWLE who are engaging in research as well as researchers looking to engage patient partners in their research projects.
Getting Oriented: A Guide for Patient Partners Engaging in a Research
This guide is intended for individuals joining a research team as a PWLE. It summarizes key questions to consider and tips to help you engage with the research team, so your engagement in the project increases the relevance and value of the research to heart patients.
Engaging Patient Partners: A Guide for Researchers
This guide is designed for researchers engaging PWLE as patient partners on research projects and initiatives. Researchers affiliated with TRANSFORM HF and the Ted Rogers Centre for Heart Research are expected to meaningfully engage patient partners, ideally from the earliest stages of the work. This guide summarizes key questions to consider and tips to help identify, onboard, and involve patient partners throughout the research process.
Patient Partner Terms of Reference
This document provides a template for a Patient Partner Terms of Reference on a research project. Terms of Reference agreements are ideally co-developed with patient partners and adapted to the specifics of your project. They are an important tool to clarify roles and responsibilities, keep team members accountable, and help the team work towards their mutual vision for the project
Patient Recognition and Compensation Policy
This document provides an overview of our approach to recognize and compensate patient partners engaging in research, programs, and initiatives.
Training & Events
TRANSFORM HF is working to build and sustain a vibrant community of engaged patient and caregiver partners who are “research-ready” and interested in being involved in the innovative research projects within our network. To this end, we offer both virtual and in-person opportunities to explore pertinent topics and learn together.
FOR PEOPLE WITH LIVED EXPERIENCE
Foundations Course: Patient Partners Engaging in Cardiovascular Research
Our Foundations Course was co-developed by the Heart Hub and PWLE with the goal of training and empowering patients, caregivers, and family members. The hybrid, three-session series was intended for PWLEs with experience as heart function patients or caregivers living in the Greater Toronto Area, offering a mix of theoretical content, experiential learning, and case studies. It culminated in a final workshop where participants had the opportunity to meet UHN Investigators to speak about their real-world projects, with the potential to be invited on as a PWLE partner.
Please send an email to info@transformhf.ca if you’d like to participate in the next session taking place in fall 2025.
Compensation for Patient Partners in Research: Webinar Series
All people with lived experience deserve to be recognized and compensated for their time and contributions to research, projects, and initiatives. Delivered in partnership with the HeartLife Foundation and Canadian Heart Function Alliance, we hosted two free webinars to provide helpful tips and information about equitable compensation for patient partners engaging in research.
Missed the sessions?
FOR RESEARCHERS
Engaging People with Lived Experience in Heart Failure Research: Webinar
In recognition of the importance of increasing patient agency in heart failure research, TRANSFORM HF hosted a workshop to introduce and contextualize principles and practices to engage people with lived experience in research. This workshop was designed to help PWLE understand the history and evidence for patient engagement and partnership in research, learn principles and best practices for high-quality engagement, and explore applications in heart failure research in our current Canadian research landscape.
Watch the recording here.
MASTERCLASS
MasterClass for Patient Partners Engaging in Cardiovascular Research
Co-hosted with the HeartLife Foundation and Canadian Heart Function Alliance during Vascular 2023 in Montreal, our MasterClass provided a full-day overview for patient partners engaging in cardiovascular research. This comprehensive training paired conceptual content with practical information, allowing participants to consider what it means to be a patient partner in health research, identify areas of strengths, and further learning for themselves.
Please note: no future dates are planned at present.
In need of additional patient partner support? Contact us at info@transformhf.ca.
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