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).  

Headshot of Director of Engagement Jenny Gilbert

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. 

The 2024 Training Innovation Fund: Call for applications

Now accepting applications!

 The CHILD-BRIGHT Network is proud to launch its 2024 Training Innovation Fund (TIF)! 
 
The 2024 TIF competition will provide a maximum of $10,000 to up to four creative and innovative training initiatives that complement patient-oriented research (POR) activities in implementation science and knowledge mobilization. These initiatives must support POR related to childhood brain-based developmental disabilities and actively integrate the principles of equity, diversity, inclusion, decolonization, and Indigenization

Click below to visit the competition page and review the full details, eligibility requirements, and application procedure.

Apply by August 31, 2024. Good luck!

Meet our previous winners:

National Indigenous Peoples Day: Spotlight on Indigenous health and wellbeing in Canada

In the past few decades, perspectives on Indigenous health in Canada have evolved dramatically. Thanks in no small part to the work of First Nations, Métis, and Inuit Elders, knowledge keepers, health care professionals, researchers, and advocates, there is increasing awareness of the need to view Indigenous health from a holistic lens. Understanding the historical, cultural, and social determinants that impact Indigenous quality of life, and respecting the cultural and spiritual beliefs tied to Indigenous well-being, are key. 

In honour of National Indigenous Peoples Day, CHILD-BRIGHT's Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program has put together a collection of educational resources on Indigenous health. These include: 

  • a timeline of key milestones relating to Indigenous health in Canada,  

  • an examination of the social factors impacting the health outcomes of First Nations, Métis and Inuit people in Canada, and  

  • an introduction to decolonizing practices that can make a difference. 

Read on to discover these resources and to learn how CHILD-BRIGHT is taking steps to support Indigenous health. 

Indigenous health through history 

Globe with map of Canada and part of the United States

In the infographic below, readers will find a comprehensive timeline showcasing key events and developments that have shaped Indigenous health and wellness in Canada. It presents the profound and ongoing consequences of colonialism, tracing the ripple effects of racism and discrimination from the pre-1600s to the present day. It also highlights pivotal moments of progress, like: 

  • the 1988 Indian Health Transfer Policy,  

  • the 2011 Aboriginal Children’s Health and Well-being Measure, and  

  • the 2023 Indigenous Child Development Initiative.  

In addition, it showcases the emergence of Indigenous-led research and initiatives, especially in the last five years. 

For those interested in learning more about the history of Indigenous health in Canada, this resource is a great jumping-off point. 

Dreamcatchers

The following infographic brings together three research articles exploring the broader social determinants of health affecting Indigenous communities. They discuss the importance of viewing Indigenous health from a holistic, or comprehensive, lens.  

Indigenous health and well-being encompass more than just physical health; they include mental and emotional wellbeing, community health, and cultural continuity.
— Exploring Indigenous Health and Wellbeing 

The articles broach the vital relationships that First Nations, Métis, and Inuit people have with land, water, family, culture, and language, highlighting the profound impact they have on their sense of identity and well-being. “The erosion of these connections can lead to significant health disparities including mental health challenges, educational barriers, and housing insecurity,” according to the infographic.  

Read the full infographic to learn more about the complex interplay between social determinants and their collective impact on Indigenous health outcomes. 

Download an accessible version of this infographic

Decolonizing practices in research 

Stethoscope

Like health care providers and policymakers, researchers can adopt strategies to address systemic inequities in Indigenous health and design more inclusive, progressive patient-oriented research (POR) projects. 

The following infographic provides an overview of cultural safety, sensitivity, and humility in health care and in research. These distinct but interconnected practices go beyond recognizing cultural diversity; they challenge researchers to make an ongoing commitment to self-reflection, learning, and improvement: 

  • Cultural safety comes down to creating environments that are safe and free of discrimination. In a research context, this might involve designing research protocols that don’t harm or infringe on Indigenous communities.  

  • Cultural sensitivity entails understanding the nuances of cultural beliefs and values. For a researcher, this might mean using data collection methods that align with Indigenous norms and practices. 

  • Finally, cultural humility is about being open to learning from patients and people with lived and living experience. For instance, researchers may co-design a study or project with Indigenous community representatives. 

Access the infographic below to learn more about cultural safety, sensitivity, and humility and how these approaches can be applied in health research and beyond. 

Download an accessible version of this infographic

How CHILD-BRIGHT is working to support Indigenous health 

CHILD-BRIGHT is committed to creating equitable, accessible, and inclusive research environments that centre the voices of equity-deserving communities in Canada.  

With this vision in mind, we have worked to understand the key contributions of Indigenous knowledge to POR and actively engage with Indigenous partners in research. For example, we are proud to collaborate with participating First Nations communities in Ontario on the Prenatal Opioid Exposure and Neonatal Abstinence Syndrome project

Marlyn Bennett

Furthermore, CHILD-BRIGHT's EDI-DI Program was established in 2022 to ensure that all voices, bodies, and experiences are included at every level of our work. This March, we were delighted to welcome Marlyn Bennett to our team as EDI-DI Co-Lead. Marlyn is Anishinaabe from the Treaty 1 community of Sandy Bay Ojibway Nation in Manitoba, Canada. Marlyn’s knowledge, expertise, and lived experience are helping CHILD-BRIGHT make the next leap in our journey towards improving Indigenous health and well-being in Canada.  

The EDI-DI Program is currently offering a webinar series, Applying Anti-Racism Principles in Health Care, which aims to highlight the impacts of racism on research outcomes and health care delivery and offer practical anti-racism strategies. Registration is open for the session on July 31, 2024. Visit the event page for full details and to reserve your spot. 

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 

Headshot of 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! 

Announcing the recipients of the 2024 CHILD-BRIGHT Graduate Student Fellowship in POR

CHILD-BRIGHT is delighted to announce the recipients of the 2024 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research! 

This fellowship is designed to create practical training opportunities for graduate students and postdoctoral fellows engaged in patient-oriented research (POR) relating to brain-based developmental disabilities in children. 

This year, the fellowship is supporting our Phase 2 initiatives, which aim to mobilize and implement our research knowledge. POR is integral to evidence-informed health care and CHILD-BRIGHT is proud to support the POR projects of the following two recipients: 

1. Development of the Gamified Version of the Jooay Mobile Application: Promoting Participating of Children and Youth with Disabilities in Leisure Activities 

Recipient: Ebrahim Mahmoudi Kojidi

Project Summary: Play is essential for every child, but unfortunately, children living with brain-based developmental disabilities face challenges when it comes to finding activities adapted to their realities. The Jooay App is a mobile health tool created to help children and youth with disabilities identify and engage in community-based leisure activities, such as sports, arts, and camps in their neighbourhoods. Currently, Jooay is used by over 5,000 rehab and education professionals, families, and youth across Canada. However, the app could benefit over 850,000 Canadian children living with disabilities and their families. 

Working under the supervision of principal investigator Keiko Shikako, Ebrahim aims to understand what mobile app features, specifically gamification features, can motivate youth with disabilities, their parents, and professionals to use the Jooay app more often. Based on their feedback, he will work to design and implement a gamified version of the Jooay App, expand and evaluate its impact, and test strategies to scale up the use of the app across Canada. 

2. Sustainability Planning with the Child-Bright Network

Recipient: Zeenat Ladak

Project Summary: Long-term planning is essential to ensure the sustainability of national health networks such as CHILD-BRIGHT's. Our Legacy and Sustainability Taskforce (LAST) was established to determine how we can sustain the network’s infrastructure beyond 2026. 

Supervised by Dr. Celia Laur, Zeenat Ladak aims to answer two research questions: (1) What aspects of the network contribute to our legacy and should continue to be supported after 2026, and (2) what strategies should be used to support the sustainability of CHILD-BRIGHT's impact and capacity building efforts? 

By using implementation science tools and working closely with the network’s Engagement Council, LAST, and parent research partner Karena Crumpler, the project team will gather and assess member feedback to inform CHILD-BRIGHT's long-term sustainability plan.