Dear CHILD-BRIGHT members,

When I joined CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) in 2018, I did so with one primary goal: I wanted to help bring youth voices to research.

Involving youth with brain-based developmental disabilities as partners has not historically been the norm in research, so it’s been great to witness how things have changed even in the past few years. It’s also been exciting to take part in the great works that the NYAP has made towards this goal.

Since 2018, the other NYAP members and I have shared our lived experience as Canadian youth with brain-based developmental disabilities—as well as our knowledge of patient-oriented research—to help shape research, first within CHILD-BRIGHT and then with Canadian researchers working on childhood disability projects. We’ve noticed that researchers are responsive to our suggestions and ideas, so we feel we are having an impact.

In 2021-22, my second year as chairperson, I was pleased to represent the NYAP in many ways, including on CHILD-BRIGHT’s Network Steering Committee and as part of a collaboration with Autism Canada. The NYAP also contributed to two panel sessions on policy and care with the Royal Society of Canada and Children’s Healthcare Canada. I’m proud that we were included in these spaces.

The NYAP also continues to offer our consultation service to Canadian researchers looking to integrate youth perspectives into their research projects about childhood disability. NYAP members completed three external consultations in 2021-22!

We’ve consistently received positive feedback about the value of our input from the project teams who have consulted with us. I see this as a sign that researchers are acknowledging the importance of engaging youth in their work.

We’ve also reached a point as a team where we can share what we’ve learned in our time as Phase 1 members, for example, we participated in a CHILD-BRIGHT Learning Series webinar in 2021 where multiple NYAP members, including myself, spoke about diversity, accessibility, and accommodation considerations when engaging youth in patient-oriented research. We were also invited to contribute to a training session led by the Kids Brain Health Network Policy Advocacy Research Training (PART) Committee on youth engagement in research.

I can’t wait to see how the NYAP continues to grow in Phase 2 and to welcome new youth members from across the country. I’m also excited to be joined by fellow long-time NYAP member Hans Dupuis as co-chair for the 2022-2024 term.

We’ll keep working together to make space for youth with brain-based developmental disabilities to be heard in research!

Logan Wong