Introducing the CHILD-BRIGHT National Youth Advisory Panel

It has always been our intention to put youth at the center of our work, and we are thrilled to announce that this structure is now in place at CHILD-BRIGHT!  

Dolly Menna-Dack

Last year, we formed a Youth Engagement Steering Committee and mandated this committee to help us establish our youth panel as well as its mandate, terms, priorities, and membership.

Dolly Menna-Dack, Clinical Bioethicist & Youth Engagement Strategy Lead at Holland Bloorview Kids Rehabilitation Hospital chaired this committee. This steering committee also included representatives from multiple provinces, members with lived experience in brain-based developmental disabilities, and experts in the field of paediatric engagement, ethics, and science.

“It has been a pleasure for me to lead this exciting initiative, and today, I’m happy to help introduce this new panel, which will be called the CHILD-BRIGHT National Youth Advisory Panel (NYAP),” says Dolly Menna-Dack.

“CHILD-BRIGHT is committed to the ideals of patient-oriented research, firmly believing that research designed, conducted, reviewed, and disseminated alongside patient-partners will increase the impact of that research. CHILD-BRIGHT has also, in numerous ways, demonstrated its commitment to patient partnership. For example, it is guided by its Citizen Engagement Council, and recently put in place a Parent Mentor. These innovative ideas have allowed for pan-Canadian involvement of families, scientists, and adults living with brain-based developmental disabilities to come together and contribute to the CHILD-BRIGHT Network,” adds Dolly Menna-Dack.
 
The NYAP will further support CHILD-BRIGHT by providing the youth lived experience lens to the work being done by the network. Meeting on a regular basis, youth advisors with brain-based developmental disabilities from across the country will review research protocols, recruitment strategies, communication plans, and dissemination activities.

And without much ado, please click below to meet each of our new National Youth Advisory Panel (NYAP) members, and click here to read about their first in-person gathering and training session!

MATHIAS

MAYA

MIKE

HANS

LOGAN

Our First National Youth Advisory Panel Gathering

This past summer, on June 23 and 24, 2018, Mathias Castaldo, Maya Pajevic, Hans Dupuis, and Logan Wong, four members of our new National Youth Advisory Panel (NYAP) traveled from Montreal, Toronto, and Calgary to attend their first training event together in Toronto. 

This inaugural training session was a combined effort by CHILD-BRIGHT and Holland Bloorview Kids Rehabilitation Hospital, put in place to help introduce the new youth panel members to their new roles within our patient-oriented research network, in which their voices as youth with lived experience with brain-based developmental disabilities will be key!

The session was hosted by Dolly Menna-Dack, Chair of CHILD-BRIGHT’s Youth Engagement Steering Committee, and was held at Holland Bloorview, where Dolly is the lead for the hospital’s Youth Engagement Strategy. 

Day 1 began with a welcome breakfast, introductions, and icebreakers and then quickly launched into the rest of the day – there was lots of learning to do! Over the course of several hours, our youth members learned about key themes in research such as communication methods, core concepts in ethics, and common issues in pediatric ethics. The day ended at Holland Bloorview’s Youth Advisory Council’s end-of-year party.

Day 2 focussed on CHILD-BRIGHT's Introduction to health research training module, followed by a tour of Holland Bloorview. Frank Gavin, the Chair of the Citizen Engagement Council at CHILD-BRIGHT joined the group at lunch. After that, the youth participated in an education session on reviewing research, as well as a workshop on understanding implicit biases and why these are important to keep in mind as advisors.

“It was an action-packed couple of days in Toronto, but it proved to be quite an inaugural event for the NYAP! Not only was the panel given a valuable introduction to their new roles and to the world of research, but it was also a wonderful opportunity to come together as members of the CHILD-BRIGHT community,” says Dolly Menna-Dack.

“It was great to put names to faces of the other members of the network, and also to get introduced in a very positive way to the realm of research, what research looks like, what research is, and what our role as members of the CHILD-BRIGHT Network will be to improve the lives and experience of those living with a brain-based disability,” says NYAP member Maya Pajevic.  

Thank you to Dolly Menna-Dack and her team at Holland Bloorview, and also to the wonderful members of both the CHILD-BRIGHT and Holland Bloorview youth committees for such a successful event!