Meet the youth with lived & living experience shaping CHILD-BRIGHT's research

CHILD-BRIGHT's National Youth Advocacy Council, or NYAC, is composed of research partners under 30 living with brain-based developmental disabilities. 

They’re helping to move the needle on doing research with (not just for) people with lived and living experience of disability. We’ve dubbed them our Lived & Living Experience Leaders!

This spring and summer, we highlighted their pivotal work at CHILD-BRIGHT as consultants and co-researchers in a LinkedIn-exclusive series. Now, you can read all 10 profiles here!

“[Self-advocacy] is about being vocal and creating representation for people with disabilities.”

— Logan

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“I’d like to see more youth with disabilities taking the lead on research projects.”

— Mathias

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“When it comes to health research, marginalized groups need to be included in the conversation.”

— Kelsey

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“[Being part of the NYAC has] helped me a lot. I have people I can talk to.”

— Jacob

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“Even though I’ve spent a lot of time studying neurotypical social interactions, it can be hard. I don’t always understand ironic jokes or innuendos. It’s a daily challenge.”

— Hans

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“We live in a world that doesn’t always give people like me the opportunity to speak for themselves.”

— Gillian

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“You wouldn’t create a product without consulting with consumers. We’ve been making these research products that didn’t involve the end users.”

— Claire

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“I think it’s important to look at brain and mental health using an intersectional lens.”

— Shafniya

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“Being unapologetically myself allows other marginalized people to identify me as a safe person, which means I can help advocate on their behalf.”

— Tommy

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“I’ve embraced my autistic traits. In embracing them, I’m able to be a better self-advocate.”

— Sierra

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Child health researchers can engage the NYAC as part of CHILD-BRIGHT’s Lived and Living Experience Consultation Service. Learn more and submit a request for consultation on your research project:

Announcing CHILD-BRIGHT’s new Director of Engagement

The CHILD-BRIGHT Network is thrilled to introduce our new Director of Engagement, Jenny Gilbert! 

Our Engagement Program focuses on authentic involvement of research partners with lived and living experience (PWLEs) in all facets of CHILD-BRIGHT's work. As Director of Engagement, Jenny will lead the program, working closely with the Engagement Program and Projects Manager and the Youth and Engagement Initiative Coordinator to strengthen engagement across the entire portfolio of network activities (implementation science research; training and capacity building; knowledge mobilization; equity, diversity, inclusion, decolonization and Indigenization; and communications).  

Jenny brings two decades of experience working in engagement, research, and knowledge mobilization in the public and nonprofit sectors to the role, including for the Ontario Midwives Association, Ontario Health/Health Quality Ontario, and the Ontario College of Family Physicians. She has also collaborated extensively with pan-Canadian networks in engagement. As such, a strong focus of Jenny’s career has been elevating the voices of people with lived experience to address inequities. In her early career, Jenny worked with children and families experiencing the impacts of colonialism, racism, and poverty in a Head Start Program on a reserve on the West Coast, and later, in Toronto with teen moms experiencing homelessness. For the past eight years, she has been a member of the Toronto Birth Centre's Quality Advisory Committee, representing lived experience and community perspectives. 

“Illustrating the story—the lived experiences—behind data is a strong passion of mine,” Jenny shares. “Listening, empathy, and curiosity—these are at the core of who I am and what I do. I approach my work from a place of humility, trust, and respect using a reflexive, intersectional lens—to get to the heart of insights and achieve outcomes that are aligned with individual, community, or organizational goals, needs, and values. I’m enthusiastic about joining CHILD-BRIGHT in this work to integrate diverse perspectives, experiences, and evidence into meaningful, action-oriented solutions for improved health outcomes for kids with brain-based disabilities.” 

“Listening, empathy, and curiosity—these are at the core of who I am and what I do.”

— Jenny Gilbert

Jenny is a parent of kids with brain-based developmental disabilities and is also the oldest of 16 kids: 12 of her siblings were adopted through the foster care system, have disabilities such as autism, fetal alcohol spectrum disorder, and learning disabilities, and experienced significant early childhood trauma. The varied experiences of her children and her siblings illustrate to her the importance of integrating perspectives of people with lived experience into research to support our understanding of the broader forces and systems that represent barriers or enablers to health, well-being, and full participation in our communities. They also illustrate how advocacy and policy change can lead to more relevant, impactful health policy, program, and service design and improve outcomes for kids and families. 

Working in the engagement sector, as well as parenting a child with autism and a rare autoimmune disease and two with attention-deficit/hyperactivity disorder, has afforded her a deep understanding of how asking parents, caregivers, and people with lived experience of brain-based developmental disabilities to contribute to research and volunteer their time can sometimes be more than they are willing or able to take on. In her view, it is essential to create engagement opportunities that consider the needs of the community and offer multiple entry–points and variable time commitments, and feel meaningful, reciprocal, and impactful to all involved. 

“So often in our work we are asked to separate our personal lives from our professional ones, so what excites me most about joining CHILD-BRIGHT is being able to bring together my experience as a parent of children with brain-based developmental disabilities with my decade-plus career in the health system facilitating engagement with people with lived experiences and building organizational capacity for inclusive engagement,” says Jenny. 

Welcome, Jenny!   

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CHILD-BRIGHT wishes to thank outgoing Director of Engagement Sharon McCarry, who led the Engagement Program from 2021 to 2024. A passionate advocate for children and families with lived and living experience of autism spectrum disorder, Sharon championed our PWLEs throughout her tenure and increased the diversity of PWLEs who are involved in our network’s activities.  

We are also grateful for the support of CHILD-BRIGHT’s Parent Liaison and interim Director of Engagement Carrie Costello. Carrie offered essential guidance at a critical time for the Engagement Program, leading the Engagement Council with compassion and creating space for our members to authentically participate. 

Announcing the recipients of the 2024 Frank Gavin Patient Engagement Awards

We are pleased to announce the recipients of the 2024 Frank Gavin Patient Engagement Leadership Awards, established in honour of CHILD-BRIGHT's first Director of the Engagement Program.  

This year, we are thrilled to recognize two partners with lived and living experience (PWLEs) for their leadership in engagement in research related to brain-based developmental disabilities in children and youth: 

• Mohammed Merchant  

• Claire Dawe-McCord  

Learn more about Mohammed and Claire: 

Parent research partner recipient: Mohammed Merchant 

A dedicated research partner and outspoken patient advocate, Mohammed first joined CHILD-BRIGHT as part of the Phase 1 research project, MATernal hyperoxygenation in Congenital Heart Disease (MATCH), which evaluated whether supplementing mothers with oxygen helps brain development in babies with congenital heart disease (CHD). 

As a parent research partner, Mohammed was instrumental in developing interactive educational materials for the study and creating ways for PWLEs to connect and support one another (such as through a support group). His contributions showcase how having PWLEs on a research team can positively impact the study approach.  

Mohammed’s feedback also supported the research team in the development of its Phase 2 study, Care Pathways for the Developmental Follow-up of Children with CHD. 

Mohammed stands out as a leader in patient-oriented research forums, regularly speaking at conferences and engaging with patient support groups. His passion for improving health care outcomes is evident in his work, and we are pleased to be able to recognize his contributions in this way. 

Youth research partner recipient: Claire Dawe-McCord 

Claire’s patient-oriented research journey began at age 13, when she took part in the CHEO Youth Forum. She became a champion for youth engagement in health care research and went on to co-chair the development of Kids Come First, Ontario's only pediatric Ontario Health Team. Claire has contributed her perspective to the Ministries of Health and Long-Term Care in Ontario, the CHEO Research Institute’s Patient and Family Advisory Committee, and CanChild. 

As a youth research partner with CHILD-BRIGHT's READYorNot™ Brain-Based Disabilities Project, she helped the team develop and study an e-health app to help youth and families take charge of the transition from pediatric to adult health care. Her undergraduate thesis also explored this transition. 

As a current member of the network’s National Youth Advocacy Council, Claire consults with childhood disability research projects to optimize their youth engagement activities. 

Now a medical student at the Cumming School of Medicine at the University of Calgary, Claire continues to mentor youth who are new to patient-oriented research. We are pleased to recognize her leadership in patient-centered approaches to research and health care delivery. 

Mohammed will receive a registration and travel allowance of up to $800 for a conference of his choice in Canada or the United States.  As the youth recipient, Claire will receive up to $800 to either attend a patient-oriented research training event, or to support a patient-oriented research project of her choice. 

Congratulations, Mohammed and Claire! 

2024 Frank Gavin Patient Engagement Leadership Awards

Now Accepting Applications!

The CHILD-BRIGHT Network is proud to launch the third iteration of the Frank Gavin Patient Engagement Leadership Award, which recognizes exceptional patient engagement leadership in pediatric brain-based disability research. Established in 2021, the award was named in honour of Frank Gavin, our former Director of Citizen Engagement, for his vital contributions to the network’s impressive growth as a SPOR entity. 

This year, we are pleased to announce that we will be granting a Frank Gavin award to not one, but two patient-partners: a parent, caregiver, or family member with lived experience, as well as a youth or former pediatric patient with lived experience. 
 
Do you know a patient-partner with considerable experience participating in patient-oriented research activities, and with proven leadership in patient engagement? Would you like to put your own name forward? We’re accepting nominations as of today!

Nominations are due by March 28, 2024

Visit the competition page for all the details, including the eligibility requirements and application guidelines. Good luck! 

Announcing the CHILD-BRIGHT Lived Experience Consultation Service

After more than six years of refining its approach to patient engagement, CHILD-BRIGHT has formed strong relationships with youth and parent-partners across Canada. In turn, our partners have developed expertise in consulting with patient-oriented research projects focused on childhood brain-based developmental disabilities.

We’re now pleased to announce the launch of the CHILD-BRIGHT Lived Experience Consultation Service for researchers external to our network looking to engage CHILD-BRIGHT partners with lived experience in their own research projects.

The consultation service will be offered through one of three avenues, depending on the needs of the research teams, in English and in French: 

• Teams looking to incorporate the perspectives of youth with lived experience of a brain-based developmental disability (ages 14-29) will be invited to work with our National Youth Advisory Panel (NYAP). CHILD-BRIGHT’s NYAP, composed of youth members who have lived experience with a brain-based developmental disability, has provided a consultation service to Canadian researchers working on childhood disability research projects since 2021.

• Teams looking to incorporate the perspectives of parents, caregivers or family members (ages 30+) of a child with a brain-based developmental disability will be invited to work with our CHILD-BRIGHT Citizen Engagement Council (CEC). The CEC is primarily composed of parents of children with brain-based developmental disabilities and other knowledge users. Since 2016, it has provided guidance on embedding partners with lived experience in all network projects and activities, to ensure authentic and meaningful engagement. As of 2023, CHILD-BRIGHT is now opening this consultation capacity up to research teams working in childhood disability across Canada.

• Finally, teams may also consult with both NYAP and CEC members, depending on their needs.

“Our CEC and NYAP members, by means of their lived experience as youth with brain-based developmental disabilities, or as parents or caregivers of children living with brain-based developmental disabilities, have accrued a wealth of knowledge in the patient-oriented research sphere, both because of their lived experience, and because of their time partnering with CHILD-BRIGHT. We’re extremely enthusiastic about putting that knowledge to good use with the CHILD-BRIGHT Lived Experience Consultation Service,” shared Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement.