November 2023
Patient Engagement in the Indirect Consequences Study
Written By: Carla Southward, PhD
At the POPCORN conference this spring I had the opportunity to hear Dr. Matt Carwana and Dr. Nadia Roumeliotis share preliminary results on the Indirect Consequences project. The data was fascinating, and I wondered if the study team would be open to sharing it with youth and parents to get their perspectives on the trends we were seeing in children hospitalized with mental health conditions. I knew Matt would be on board since we had chatted earlier in the year about putting together a group of research advisors for POPCORN. This however was my first time meeting Nadia, so I introduced myself and boldly asked “Would you ever consider involving patients in your research?"
Nadia was very appreciative and honest. She was open to the idea but wasn’t sure who to involve and when. I told her that’s what the Patient Engagement Team was for, and that we could work together to put a plan into action. Nadia liked this idea and was particularly interested in how parents and youth could help identify areas where we can dive deeper into the data. So, it was on! And I spent the summer looking for youth and parents who would be interested in a consultation to learn about the results and share their experience during the pandemic and how it impacted their mental health.
Finding youth wasn’t hard, people were genuinely interested and wanted to help. What was difficult was keeping people interested, especially with a consultation date that had a moving target because data wasn’t available and ready for interpretation. In the research world, we are used to this – delays. For the youth, it unfortunately meant bad timing – as school was in full swing and classes were demanding. Parents on the other hand were harder to find but generally more readily available. A great learning experience for future engagements!
Image of three people working over various charts and graphs
On November 19th, together with the Indirect Consequences and Knowledge Mobilization Teams, we hosted our consultation. We asked patients and families about what stood out about the data, what was expected and unexpected, what restrictions would they have kept or removed. It was a very engaging two-hour session, rich with the context of youth and parents’ personal experiences of what it was like to live with a mental health condition during the pandemic. These insights and perspectives have generated new ideas for diving deeper into the data. In addition, involving patients at this stage of research also led to youth partners supporting the next steps of the Indirect Consequences project, including framing interview questions for the qualitative study. The Indirect Consequences team came away with some great outcomes from the consultation, and as importantly, so did the youth and families involved. All were keen to participate, and many will take on new roles to support the project. One youth shared how healing it was to reflect on their experiences and to know that they were not alone.
If you are interested in learning more about how patient engagement can support your study, email me! Let’s chat about how the Patient Engagement Team can help enrich your research with lived experience and diverse perspectives. 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.