The Siden Research Team: Recognizing Patient and Parent Partnership in Health Research
What does it actually take to make patient, parent, and youth partnership more than a checkbox in health research? This three-part series follows the Siden Research Team at BC Children’s Hospital Research Institute as they dig into that question from the inside. It also turns to VOICE: The Childhood Ethics Project, to see what youth-led co-creation looks like in practice. Produced in collaboration with Matters of Engagement, the series traces how contribution gets made, and how often it goes unrecognized, across pediatric and youth health research.
You’ll hear from research librarians, coordinators, student researchers, a parent partner who became a researcher of partnership itself, and youth advocates working to change what counts as knowledge and who gets to create it. The series doesn’t stop at documenting the gaps. It asks what real recognition requires, and what changes when partners are treated not as subjects, but as co-creators.
The Siden Research Team is supported by Canuck Place Children’s Hospice and the Child-Bright research network and is located at the BC Children’s Hospital Research Institute in Vancouver. The rapid scoping review is supported by the BC Children’s Hospital Research Institute and Brain, Behaviour and Development.
Episode 1
Who Gets Credit? Searching for Partner Contribution in Pediatric Research
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.
Episode 2
Embedded: What Partnership Actually Looks Like From the Inside
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.
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.
Episode 3
Youth as Co-Researchers: Inclusion, Recognition, and Advocacy
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.