Patient and family engagement
Patients and families bring critical expertise through lived experience. We help create opportunities for meaningful collaboration and invaluable insights across research activities, ensuring that research priorities, processes, and outcomes better reflect the needs of the communities they serve.
We are dedicated to supporting the integration of diverse children, youth and families with lived and living experiences of pediatric rare diseases across the network and in clinical trial research. As partners with lived experience, our hope is to build capacity, promote community, and support meaningful youth, patient and family engagement.
Impact
Our work aligns with RareKids-CAN’s three strategic priorities, helping to ensure that youth, patient, and family perspectives are reflected and integrated across the network’s activities and future directions.
Our core values
Our core values are influenced by CanChild Family Engagement in Research Program
What we do
We promote Partnership Across the Network: We are a community of youth, patient, and family partners who support engagement in ways that are thoughtful, meaningful, and connected to the priorities of the network. Our work aligns with RareKids-CAN’s three strategic priorities, helping to ensure that youth, patient, and family perspectives are reflected and integrated across the network’s activities and future directions.
Mutual respect and equity
Youth, patients, families, researchers, and
clinicians are recognized as equally valuable contributors.
Meaningful partnership
Engagement goes beyond token participation. Youth, patients and families are invited to contribute at levels that match their interests, capacity, and goals.
Compassion and community
Relationships are grounded in empathy, trust, and belonging.
Impact through collaboration
Research and engagement activities are guided by the shared goal of improving outcomes and quality of life.
RareKids-CAN’s engagement community leads
Dr. Andrea Cross
Sara Pot
Alicia Hilderley
What does engagement look like?
- Attending Coffee Chats and Community Meetings
- Accessing updates and resources via the network newsletter and our community resource board collections
- Partnering on short-term projects and one-time opportunities
- Consultation or advising via surveys and focus groups
- Partnering on longer-term projects across network programs and activities
- Joining a sub-platform to help plan, support, collaborate, or co-lead projects and activities
- Participating in engagement and presentation opportunities connected to network
“Engage patients and family members as equal partners and valued members of the research team”
Canadian Institutes of Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) (2011)
Community resource board
Explore a collection of resources curated by patients and families to share helpful information and experiences to support your journey in research and navigating the rare disease landscape.
These resources have not undergone the same review process as RareKids-CAN’s educational tools, and resources and are provided for informational purposes only.
Learn more
To learn more about about RareKids-CAN youth, patient, and family engagement work, email rkengage@mcmaster.ca