Matters of Engagement examines issues at the intersection of health, health care and society. Including: how people in Canada access and experience health care service delivery and distribution; how those experiences impact both individual and community health; and the multitude of environmental, systemic, and political factors that favour some and disadvantage many.
Jennifer Johannesen and Emily Nicholas Angl produce each episode with the aim of illuminating difficult or confounding issues, to provoke much-needed critical dialogue among all stakeholders.
Youth as Co-Researchers: Inclusion, Recognition, and Advocacy (3 of 3)
To wrap up the series, we turn to another group that's routinely excluded from research meant to serve them: young people.
VOICE — the Childhood Ethics Project — is co-led by a Youth Advocacy Council and university-based researchers. It started as a conventional academic collaboration and evolved into something more deliberate: a project that actively works to include youth not as subjects but as co-creators of knowledge. We talk with VOICE co-investigator and Canadian Journal of Public Health senior editor Mary Ellen Macdonald, Youth Advocacy Council chair and childhood ethics researcher Nika Rovensky, and recent McGill graduate and youth advocacy council leader Ryan Kent about the systemic barriers youth face when trying to contribute to research, what meaningful inclusion looks like in practice, and how a single rejected manuscript sparked a new editorial policy at a major public health journal. Conversation facilitated by Candice Barrans, who joins us again from the Siden Research Team.
[download transcript]
Health Canada Study (referenced in the episode):
Video created by Nika & Ryan: Engaging Young People in End-of-Life Care
Campbell, S., N. Rovensky, R. Kent, L. Delaney, F. A. Carnevale, and M. E. Macdonald. 2026. “Listening to Young People on Childhood Death: A Youth-Focused Participatory Approach to Children's Palliative and End-of-Life Research and Policymaking.” Children & Society1–10. https://doi.org/10.1111/chso.70066.
Links:
VOICE The Childhood Ethics Project
Siden Research Team
BC Children's Hospital Research Institute
21 Jul 2026
Embedded: What Partnership Actually Looks Like From the Inside (2 of 3)
Being a parent or patient partner can mean a lot of things. In this episode, we go inside the Siden Research Team to find out what it actually looks like when partnership is done differently.
Candice Barrans joined the Siden Research Team as a parent partner after her son was diagnosed with Down syndrome. She came with questions about how parent partnership works, and ended up doing research about it. With research coordinator Anne-Mette Hermansen and student research assistant Gabriel Zamma, we explore what embedded partnership means in practice, what happens when a parent brings a perspective no one else on the team has, and what it means to be recognized not just as a patient's parent, but as a whole person.
[download transcript]
Links:
Siden Research Team
BC Children's Hospital Research Institute
7 Jul 2026
Who Gets Credit? Searching for Partner Contribution in Pediatric Research (1 of 3)
When patients and families help design and conduct research, what evidence can we find of their contributions? The Siden Research Team at BC Children's Hospital Research Institute set out to answer what seemed like a simple question, and hit a wall. Studies involving patient and parent partners were difficult to find systematically, and even when found, contributions were rarely acknowledged or poorly described. In this episode, we talk with research librarian Colleen Pawliuk, research coordinator Anne-Mette Hermansen, and student research assistant Gabriel Zamma about what they discovered when they launched a rapid scoping review to map how patient partners are, and are not, recognized in pediatric health research.
[download transcript]
Links:
Siden Research Team
BC Children's Hospital Research Institute
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