January 2024
Quality Data Starts with Quality Experience
Written By: Carla Southward, PhD
January has been a busy month for POPCORN patient engagement! Not only are we working with our EDI Team, Knowledge Mobilization Team, and POPCORN executives, on a grant submission to do co-design work with equity-deserving communities, but we’re busy sharing our story as well. Specifically, sharing POPCORN’s story, and how patients and families are central to everything we do.
CHILD Study: We were recently asked to share our engagement strategy with the CHILD Study Cohort. At the CHILD Annual Coordinators Retreat, we spoke with CHILD research coordinators on implementing patient engagement at the site level. This small ask led to facilitating a half-day workshop to help CHILD develop principles behind effective participant engagement and a strategic plan for future engagement activities.
SickKids/CHILD Symposium: At the Let’s Be Precise: Future of Child Health Symposium, we were invited to speak on a panel to discuss what emerging hospital/clinical/disease cohorts should consider when integrating patient perspectives into cohort development. Using concrete examples from POPCORN patient engagement activities, we shared three takeaways:
Engage youth and families early in the research process.
Be flexible and open to adapting as you go (participant/family feedback is valuable throughout the study).
Quality data starts with quality experience. Investing in supportive and reciprocal relationships with patients and families helps support recruitment, retention, and continuous engagement.
Help us spread the word about POPCORN! If you have opportunities to share our strengths as a network, please reach out — email carla.southward@sickkids.ca.
To learn more about ways to get involved in POPCORN research, please email:
Carla Southward, Patient, Family, and Engagement Coordinator
carla.southward@sickkids.ca.