Overview
In this episode of asPERusual, host Anna Chudyk speaks with Sara Pot (family partner with lived/living experience) and Alicia Hilderley (clinical-trials researcher) about their shared Patient & Family Engagement Facilitator role at RareKids-CAN, Canada’s pediatric rare disease clinical trials and treatment network. Together, they unpack how pairing lived/living and research experience moves teams beyond advisory panels into embedded partnership, and how trust, safety, and thoughtful design shift power dynamics in the day-to-day.
Key Topics & Takeaways
From Advisory to Integrated Partnership — How RareKids-CAN places youth and family partners inside governance and decision-making (not just consultative roles), with flexible levels of engagement across a coast-to-coast community.
The Shared Role Model — Why splitting the facilitator role between a family partner and a researcher strengthens fidelity, closes knowledge gaps (e.g., clinical-trials literacy), and makes brokering relationships and readiness support possible for both partners and researchers.
Trust, Safety & Language — Using first-name culture, appropriate vulnerability, and clear boundaries to reduce hierarchy; asking “What does a safe space look like for you?” before deeper “help me understand” conversations.
Working Together Agreements (Living Docs) — A more approachable take on a terms-of-reference document. These living agreements capture who each team member is, how they like to be referred to, what motivates their engagement, and how they’d like to be engaged.
Embracing diverse perspectives — Recruiting multiple partners, resourcing varied levels of engagement, and routinely asking “Whose story is missing?” to prevent over-reliance on one voice.
Meet our guests
Sara Pot and Alicia Hilderley share the role of Facilitator of Patient and Family Engagement for the RareKids-CAN Pediatric Rare Disease Clinical Trials and Treatment Network.
Sara Pot is an educator, writer, facilitator, and parent of four, including two fantastic teens who require constant care specific to their rare diagnosis. Influenced by her family’s journey through both the hospital and pediatric rehabilitation systems, Sara is involved with training and developing patient & family engagement strategies in health research and health practice. Much of her work is with RareKids-CAN and CanChild’s Family Engagement in Research course.
Alicia Hilderley is a researcher and a patient who is passionate about family engagement in pediatric research. In addition to her role at RareKids-CAN, she is a postdoctoral fellow at the University of Calgary, an instructor with the Family Engagement in Research program, and a patient at The Ottawa Hospital.
