To all our members, 

On a personal level, 2021-22 was a milestone: It marked my first year as CHILD-BRIGHT’s Director of Citizen Engagement (CE), as well as my fifth year with the network.                                      

In fact, as a long-time advocate for families living with autism spectrum disorder and other neurodevelopmental disabilities as well as a CHILD-BRIGHT parent-partner prior to taking on this role, I have been fortunate to witness firsthand how the network and its approach to partner engagement has grown over the years.

In that time, I’ve sat in on and participated in an untold number of conversations about how to best engage (and retain!) our patient- and community partners.

Again and again, one of the themes that I’ve heard come up is that of recognition. How are we ensuring that the tireless efforts of our patient- and community partners are appropriately acknowledged?

With these past discussions in mind, I’d like to take this space to do just that.

I’ll start off by thanking the 72 patient-partners—of whom 41 are parents, 16 are youth, and two are former pediatric patients—and 13 community partners who are currently engaged at CHILD-BRIGHT. We continuously engaged patient-partners on all projects and in every program committee in Phase 1 and are happy to notice the continued steady increase in our number of partnerships over the years, which I believe to be a testament to the strength and durability of the connections we have fostered over time. 

I’d also like to recognize members, past and present, of our program’s two committees, the Citizen Engagement Council (CEC) and National Youth Advisory Panel (NYAP), for their devoted efforts. These parents, patients and youth have been the backbone of this program, as they’ve offered guidance in ways to initiate, improve, and sustain engagement within the network. Working alongside these motivated members continues to be a pleasure.

In particular, I’d like to highlight the work of our youth members in taking the initiative to set up and launch their consultation service for Canadian researchers seeking input on their childhood disability studies. Seeing them make their voices heard in research really hammers home a familiar (but no less true) adage: Nothing about us without us.

A crucial component of patient recognition is also equitable remuneration. From the very beginning, CHILD-BRIGHT has striven to be a leader in fair compensation for our partners involved in research, governance, and network activities. The network established a set of compensation guidelines early on in Phase 1. We’re also working to develop and deepen relationships with people from underrepresented groups and have updated our compensation guidelines to ensure that these are appropriate and equitable for these new partnerships.

Speaking of leadership…After six years of the network’s existence, there are many true leaders in patient engagement who have emerged. My mind goes first to my predecessor Frank Gavin, who expertly led CHILD-BRIGHT’s citizen engagement efforts between 2017 and 2021. This past year, we launched the Frank Gavin Patient Engagement Leadership Award in his honour. Donna Thomson, our inaugural recipient, has been a fearless advocate and beacon of excellence both within CHILD-BRIGHT and in the wider research community.

As we grow together in Phase 2 of the network, many things will continue to evolve and shift—as they should! Thanks to our engagement measurement strategy, a collaboration with the Knowledge Translation program team, we have collected solid information about how to optimize our engagement in the years to come.

At the same time, I know one thing will not change: the quality of the people around me. You all continue to inspire with your brilliance and dedication to improving the lives of infants, children, and youth with brain-based developmental disabilities and their families and are doing so in true partnership with us.

Hand in hand, let’s move forward with confidence on the road ahead.

Sharon McCarry