October 2023

Closing the Loop

Written By: Carla Southward, PhD

How often do you share results or outcomes with patients and families involved in your research? It doesn’t matter whether we work with youth or parents as research participants or partners, what matters is that we communicate with them. Communication is key to any healthy relationship and investing the time to build and foster relationships pays dividends. Take for example the project we did with youth and parents to help make our POPCORN website more patient and family-friendly. This could have been a one-off project with a deliberate start and end date – and in fact, it started as one! But as we collected feedback, turned that feedback into recommendations, implemented the changes and designed a new website, we kept the dialogue open and shared updates every step of the way. The results? A diverse group of research advisors interested in child health, who felt that 1) they had the opportunity to express their views and 2) their contribution was appreciated by the POPCORN team. One lesson learned from this project was how important it is to ensure everyone has a clear idea of their role. While communication with the youth and parents was frequent, we began referring to them as POPCORN research advisors when our initial communication was that this was a one-off project. This was confusing for a few of the youth and parents and reminded us of how important transparency is. Thankfully, the title of “research advisors” was welcomed by the youth and parents, as are more opportunities to get involved in POPCORN.

While the project is nearly finalized and the website is almost ready to launch, communication with our research advisors is still going strong. We will continue to share opportunities such as EDI training, and other POPCORN research-related activities. If you have any questions about patient engagement or ideas to engage with youth and parents, please feel free to reach out! Contact 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.