March 2023

POPCORN’s CARE Method

Written By: Carla Southward

Hi! I’m Carla Southward and I am the Patient, Family, and Community Engagement Coordinator for POPCORN. I am here to support POPCORN researchers interested in partnering with patients and families. Feel free to reach out to me if you have questions, ideas, or require resources to bring in patient partners to support your work. I am here to help and I have awesome colleagues like Carrie Costello, Francine Buchanan, and Megan Bale-Nick to support me!

I want to share with you a few take-home messages from a recent consultation Megan and I did with 10 youth, parents, and community representatives across Canada to understand how we can meet the needs of patients and families and increase recruitment and retention of POPCORN participants. This consultation was part of a partnership between the community, MICYRN, the Knowledge Mobilization team, and the Patient Engagement team to make the POPCORN website more relevant, useful, and accessible for patients and families involved in the POPCORN study. While the partnership is still in its infancy, we heard some great feedback that we feel is worth sharing that will help you CARE for your study participants and support your own work:

C - Clear Understanding. It is important for patients and families to have a clear understanding of what the study is about, how it is going to make a difference for children, and what expectations you have of them. Think of a party invitation! Spell out WHO, WHAT, WHEN, WHERE, and WHY. Understanding the 5 Ws makes it easier for families to decide to participate and keeps them motivated to stay involved in the study over the long term.

A - Attitudes and Motivations. Motivations for participating in a research study can vary and factors such as a person’s cultural background, emotional state, and availability can influence their decision to participate. Consistent drivers for participation are the perceived importance of the study topic, compassion from the research team, safety of the participant (i.e., privacy), and contribution to the science/helping others in a similar situation.

R - Results. Do not underestimate the importance of continuous communication with participants! Provide updates about the progress of the study and share results with participants. Patients and families want to know the impact of the results and how their contribution is making a difference for others.

E - Empathy and Acknowledgement. Patients and families are giving their time, energy, and sometimes blood to participate in a study. Make sure to acknowledge their participation and listen to their needs. Offer a place for them to share their questions, concerns, or feedback and follow up with them if/when appropriate. Recruitment often takes place during a very vulnerable time in their lives, thank them for their contribution and do it in a meaningful way.

With CARE, we aim to improve recruitment, retention, and data quality for POPCORN. By listening, understanding, and addressing the needs of patients and families, we increase the likelihood of participants entering and completing the study. This, in turn, will improve the quality of the research outputs for POPCORN. As a next step, we are planning to meet with our youth, parents, and community representatives to share back how their voices are helping to shape POPCORN’s approach to supporting patients and families, and how they can continue to partner in other projects and initiatives within the network. If you are interested in connecting with our patient partners, please reach out to me at 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.