Overview
In this episode of asPERusual, host Anna Chudyk speaks with Sara Pott (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.
