Description:
From Participants to Partners: Fundamentals of Engagement in Research is an introductory session led by RareKids-CAN’s patient and family engagement facilitators, drawing on content from CanChild’s Family Engagement in Research Course (McMaster University). This session builds knowledge and awareness of patient and family engagement in research, covering what meaningful engagement is, why it matters, its benefits and challenges, and strategies for creating authentic partnerships. Co-facilitated by a family leader and a researcher, the workshop combines learning activities, group discussion, and practical tools that participants can adapt to their own settings.
Objectives
At the end of the session, participants will be able to:
- Define patient and family partnership in the context of research and describe the various roles patient and family partners can play throughout the research lifecycle.
- Define “meaningful engagement” and describe what successful patient and family partner engagement looks like in practice.
- Identify and describe available tools and resources to support meaningful patient and family engagement and partnership in research.
Target Audience: Clinical Geneticists, Laboratory Geneticists, Genetic Counsellors, Trainees, Molecular Pathologists, Medical Lab Technologists
CanMEDS Roles: Medical Expert (the integrating role), Communicator, Collaborator, Scholar, Professional
Speakers: Dr. Alicia Hilderley, Sara Pot, Kateryna Kratzer, Dr. Catalina Lopez-Correa – moderator
Event Timeslots (1)
AM Breakout Group 1
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KC 101-103-105 - Dr. Alicia Hilderley, Sara Pot, Kateryna Kratzer
