To our CHILD-BRIGHT community, 

It’s hard to believe I am penning these words for our sixth annual Report to Community! When we launched this network in 2016, we set an ambitious goal: pioneering patient-oriented research to meaningfully improve the lives of children and youth with brain-based disabilities and their families.

We had high hopes, but the network’s advances since then have exceeded all of our wildest expectations. I’m so proud to see the strides we’ve collectively taken in meeting this goal. As Phase 1 of our network winds down, we are turning our attention to the question of how we can continue building on this momentum to accomplish our mission in Phase 2. At this turning point, I am moved to look back not only at the accomplishments of the 2021-22 year but from the entire span of this first phase of our work.

Allow me to share just a few highlights of the past six years with you here:

RESEARCH 

Our 13 patient-oriented research projects have progressed by leaps and bounds since the beginnings of the network. In some ways, we were starting from scratch in developing research processes in partnership with patients and health/community partners. Our research project teams have been at the forefront of innovation in patient-oriented research. Guided by our Research Program team, each project has spearheaded novel interventions to improve the health outcomes of children with brain-based developmental disabilities using child and family-focused approaches.  

We’ve also learned how to leverage our network structure to best effect. Our Research Program has facilitated connections across the 13 project teams through quarterly meetings throughout Phase 1. These meetings have led to program-wide initiatives and allowed for new collaborations across project teams to flourish.

None of these research activities would be possible without the engagement of our patient-partners, including 41 parents, 18 youth with brain-based developmental disabilities, and 13 partnering First Nations communities —as always, I am grateful to our partners for the trust they continue to place in CHILD-BRIGHT and what we are building together.

CITIZEN ENGAGEMENT 

Throughout Phase 1, our Citizen Engagement Program has worked to create meaningful connections with our patient- and community partners. Building strong relationships takes time, but we have seen it pay off in how responsive our research activities have been to the needs of children and youth with brain-based disabilities and their families. These authentic collaborations have ensured that our research is relevant and meaningful to families, and likely to have a greater impact on the health care of children with developmental disabilities and their families.

The two committees at the core of this program, the Citizen Engagement Council (CEC) and the National Youth Advisory Panel (NYAP), have overseen the engagement of our patient- and community partners. The CEC established and revised compensation guidelines to support our patient-partners’ contributions as members of CHILD-BRIGHT. The program also pioneered a Parent Liaison role, created to help onboard new parents to the network and provide ongoing support. Meanwhile, the NYAP has been hard at work establishing its own set of tips for researchers looking to engage youth and setting up its consultation service.

KNOWLEDGE TRANSLATION 

Right from the start, our Knowledge Translation (KT) Program opted to spearhead an integrated KT approach, which engages potential knowledge users (families, people with disabilities, other scientists, clinicians, government agencies and funding partners) as partners in the research process.

This approach has yielded significant results, as we have disseminated knowledge throughout the research process. Over 900 participants have attended the series of webinars our KT team has conducted in collaboration with Children’s Healthcare Canada and CHILD-BRIGHT research projects.

We’ve also fostered innovation in KT thanks to two funding competitions. Seven projects received funding from our KT Innovation Incubator, while the KT outputs of eight CHILD-BRIGHT research teams were supported through our ConneKT grant.  

TRAINING  

Our Training Program had a crucial role right in Phase 1: introducing our members to the core elements of patient-oriented research through workshops and webinars exploring the general application of patient-oriented research principles within research projects. Building on this baseline knowledge, over the years our Learning Series and Patient-oriented Discussion sessions explored more challenging topics as teams worked to navigate the intricacies of effective partnership.

As the network’s collective capacity developed, the Training Program team turned its attention to the next generation of patient-oriented research researchers through the Summer Studentship and Graduate Fellowship, Training Innovation Fund and Collaborative Mentorship Grant.

The Training Program also built relationships with other SPOR entities across Canada throughout Phase 1, which led to the creation of the SPOR National Training Entity which will not only streamline patient-oriented research training activities across Canada, but design novel ways of delivering training and mentorship opportunities.

SUPPORT SERVICES 

Undergirding all our Phase 1 research activities was i) our Data Coordinating Centre team, which set up research project databases and supported the data quality management and analytics needs of each study, and ii) our Health Economics team, which provided ongoing support for the development and implementation of economic evaluations for our research projects.  

Throughout, our central office team has ably shepherded our many activities and shared the results with the community.

Thank you to the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR), our 28 Phase 1 funding partners, and our 15 Phase 2 funding partners for making our work possible, in the past, present, and future.

Our sights are now set on the future as we build on these many successes. We’ve set the stage; now it is time to move our patient-oriented research into action through insight and methods grounded in implementation science and knowledge mobilization that embed the principles of equity, diversity, inclusion, decolonization and Indigenization. From 2022 to 2026, with your support and that of all our members, we hope to go from Network to Movement.

It’s been an honour to grow with this network for the past six years. And I know the future is bright. Collectively, we have so much more to contribute to the evolving landscape of patient-oriented research. Will you join us in this next stage of our network?  

With gratitude,  

Annette Majnemer