CHILD-BRIGHT Acknowledgement Statement for PRIDE Month and National Indigenous Peoples Day

In the month of June, we pause to commemorate and acknowledge two important occasions: National Indigenous Peoples Month and PRIDE Month. These days hold great significance in acknowledging and honouring the past and continuing experiences, contributions, and struggles of the Indigenous Peoples and the 2SLBGTQIA+ community. As part of our commitment to redress and reconcile, our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program actively strives to establish and maintain research, network and program environments that are equitable, accessible, and inclusive.

On June 21 we join the nation in honouring National Indigenous Peoples Day. It is a day to recognize and appreciate the rich cultural heritage, wisdom, and resilience of Indigenous Peoples. We acknowledge the historical and ongoing injustices faced by Indigenous communities and affirm our commitment to reconciliation, decolonization, and Indigenization efforts. This is a time to listen, learn, and amplify Indigenous voices, valuing their unique perspectives and knowledge.

As we observe PRIDE Month, we stand in solidarity with the 2SLBGTQIA+ community, celebrating the importance of fostering an inclusive, accepting and welcoming environment for all individuals, regardless of their sexual orientation or gender identity. We recognize the importance of advocating for their rights and well-being, striving to become better allies each day. This is a time for us to reflect on the progress made and the work that still lies ahead in fostering equity, diversity, and inclusion.

As individuals and as a society, we have a responsibility to create a world that embraces and respects the rights and dignity of all individuals, regardless of their sexual orientation or gender identity, and to honour and uplift the Indigenous Peoples who have stewarded the land for generations. This period serves as a reminder of the ongoing journey toward equity, justice, and understanding.

At CHILD-BRIGHT, we are dedicated to fostering an environment of inclusivity and social justice. We believe that every child and family deserves the opportunity to thrive, free from discrimination and with access to equitable healthcare. Through our EDI-DI Program we aim to contribute to the advancement of research excellence by embracing a health equity approach in patient-oriented research.

During this month of reflection and acknowledgment, let us reaffirm our commitment to creating a world that embraces diversity, supports equity, and champions the rights of Indigenous Peoples and 2SLBGTQIA+ individuals. Together, we can forge a path towards a more inclusive and just society, where every child's potential can be realized.

Azrieli CHILD-BRIGHT Fellowship Program - Third Call

Three new positions available!

In collaboration with the Azrieli Foundation, CHILD-BRIGHT is sending a third call for postdoctoral researchers to work on our implementation science research projects, and to help programs mobilize knowledge to action in support of children with brain-based developmental disabilities and their families. 

We are looking to fill three new positions for the following network teams:

• Fellowship working on the hybrid implementation validation trial of virtual reality assessment and intervention tools for neurodevelopmental and brain-based disorders (Supervising PI: Jennifer Crosbie, SickKids)

• Fellowship dedicated to creating inclusive research environments for health equity (Supervising PI: Nomazulu Dlamini, SickKids)

• Fellowship to support and empower families as they and their baby transition from the NICU to home (Supervising PIs: Julia Orkin and Eyal Cohen, SickKids)

Applications are due by July 15, 2023. 

Do not hesitate to contact pierre.zwiegers@child-bright.ca for further details as necessary, and please take a moment to share this opportunity within your networks to help us find these candidates. 

CHILD-BRIGHT submits brief to House of Commons Standing Committee on Health

CHILD-BRIGHT is proud to share that we have submitted a brief to the House of Commons Standing Committee on Health as part of their children’s health study, which lists recommendations and considerations to improve the health and well-being of children with brain-based disabilities and their families in Canada.

What is the House of Commons Standing Committee on Health (HESA)?
HESA reviews and reports on all matters relating to the mandate, management, and operation of Health Canada such as health-related bills and reports, budgetary estimates, examinations of qualification and competences. HESA also has oversight responsibility of four agencies that report to the Minister of Health (the Canadian Institutes of Health Research, the Patented Medicine Prices Review Board, the Canadian Food Inspection Agency, and the Public Health Agency of Canada).

HESA can also make decisions to study other matters. It holds public meetings and collects information from witnesses, reports on its findings, and makes recommendations.

This year, HESA opened a process allowing Canadians to submit recommendations relating to children’s health in Canada, so we jumped at this opportunity!

Why is CHILD-BRIGHT well positioned to put forward recommendations on children’s health?

CHILD-BRIGHT believes that federal leadership is urgently required to measurably improve the health and well-being of Canada’s children and youth, and we believe that we are uniquely positioned to support this work.

In Canada, as many as 850,000 children are living with a brain-based developmental disability and face life-long challenges with mobility, language, learning, socialization, and/or self-care that impact the quality of life of the child and their family. Since 2016, CHILD-BRIGHT has been spearheading a movement for change for these children, youth and families; we have been centering patients in research teams, moving research into improved practice and policy, and moving children and families forward towards brighter futures.

We believe that our network and its activities can be leveraged to overcome barriers to health research, tackle health service backlogs, and foster partnerships to address health human resource challenges.

What was the purpose of CHILD-BRIGHT’s brief, and what are our recommendations?

The CHILD-BRIGHT team had three objectives when submitting our brief:

• To raise awareness of our network, its work and its progress within HESA

• To highlight our collaboration with Inspiring Healthy Futures and reaffirm our support of their five identified priorities for action:

  • Impactful research and knowledge

  • Child-centered policies and structures

  • Schools and communities as hubs of health and well-being

  • Accessible and adaptable health systems

  • Mobilized communities around children, youth and families.

• To put forward four additional recommendations and considerations:  

  • The need for continued research funding in the area of brain-based developmental disability in children and youth

  • That health research funding take a “life-course” approach, with attention paid to the health of children and youth across the entire CIHR portfolio

  • That attention be paid to ability and disability in all considerations of equity, diversity and inclusion

  • That CHILD-BRIGHT funding be renewed past March 2026.

Read the full CHILD-BRIGHT brief.

CHILD-BRIGHT also collaborated with Keiko Shikako, Canada Research Chair in Childhood Disability and CHILD-BRIGHT Knowledge Mobilization Program Co-Lead, for a second brief to HESA on behalf of the Participation and Knowledge Translation Lab (PAR-KT Lab), in collaboration with the Transforming Autism Care Consortium.

Five recommendations were put forward in the PAR-KT Lab brief:

• That children with disabilities and their families be included in consultations and strategies when elaborating health policy and service

• That impactful research be supported

• That the experiences of people with disabilities who are vulnerable for more than one reason, or who are underrepresented, be better understood

• The child-centric policies be adopted

• That ongoing health promotion strategies to include children with disabilities be leveraged

• That accessible, adaptable, and integrated health and well-being systems be created.

Read the full PAR-KT Lab brief.

We thank all HESA members for their time reviewing our recommendations and hope that the insight we bring forward—which has been informed by our network patient-partners since 2016—will help inform and steer HESA’s children’s health priorities in coming years. Together, we can achieve the goal of improving the health and well-being of Canada’s children and youth!

Azrieli CHILD-BRIGHT Fellowship Program

In collaboration with the Azrieli Foundation, CHILD-BRIGHT is looking to recruit a cohort of postdoctoral researchers to work on our implementation science research projects, and to help programs mobilize knowledge to action in support of children with brain-based developmental disabilities (BDD) and their families.

We are looking to fill 6 or more postdoctoral positions for up to two years. Ideally, qualified applicants will have strengths in implementation science research and expertise in disseminating research knowledge and supporting the uptake of evidence into practice.

Further, applicants should have a strong interest in patient-oriented research, a passion for supporting children with BDD and their families, as well as practically applying the core principles of equity, diversity, inclusion, decolonization, and Indigenization (EDI-DI) throughout health research.

Applications are encouraged by October 17, 2022. However, the application process will remain open until all positions are filled. Applications will be reviewed and assessed on a rolling basis as they are submitted.

Do not hesitate to contact pierre.zwiegers@child-bright.ca for further details as necessary, and please take a moment to share this opportunity within your networks to help us find these candidates.

Getting to know our Phase 2 Programs: Equity, Diversity, Inclusion, Decolonization and Indigenization

As recently announced, the next phase of the CHILD-BRIGHT Network is being made possible thanks to a grant from the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR), as well as matching funds from our generous partners. This support will allow us to grow from Network to Movement as we realize our mission for 2022-2026: moving 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. 

In order to achieve this vision and become a movement for change for children and youth with brain-based developmental disabilities and their families, we have brought together experts from across Canada to lead our five patient-oriented programs.  

Our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program will deploy initiatives to ensure that EDI-DI principles are authentically embedded in our four other programs and our governance structure. These efforts will be led by CHILD-BRIGHT’s Director of EDI-DI Nomazulu Dlamini. 

Nomazulu Dlamini  
CHILD-BRIGHT Director of EDI-DI 
Staff Neurologist, Division of Neurology, SickKids 
Associate Professor, Department of Paediatrics, University of Toronto 

We sat down with Noma to learn more about the EDI-DI Program’s plans for Phase 2: 

WHAT IS YOUR PROGRAM’S MANDATE? 

Nomazulu Dlamini: Our EDI-DI Program looks to ensure all voices, bodies, and experiences are included in all aspects of our network’s work.   

Our primary goal is to establish and maintain equitable, accessible, and inclusive research environments while advancing research excellence through health equity in patient-oriented research (POR) using an intersectional approach with other network collaborators across Canada. 

We will ground the network’s activities in our EDI-DI framework. Our principal objectives for Phase 2 include increasing our representation of equity-deserving groups across our network such as patient-partners, trainees, researchers, and participants, as well as centering the voices of people with lived experience and Indigenous Ways of Knowing & Being. This is essential to address health inequities that persist within these communities. We will also build EDI-DI training capacity into patient-oriented research to impact patient-partner engagement, training, research design, implementation science (IS), and knowledge mobilization (KM).  

HOW DO YOU PLAN TO ACCOMPLISH THIS? WHAT ARE THE MAIN TOOLS (CONCEPTS, FRAMEWORKS) THAT WILL BE USED TO FURTHER THIS MANDATE? 

ND: In 2021, we developed our EDI-DI framework, which outlines our commitments to shifting the culture of the CHILD-BRIGHT Network and actively taking part in reflective practices throughout our engagement, research, and knowledge mobilization work. In Phase 2, we will integrate the EDI-DI framework, Indigenous Ways of Knowing & Being, and impacts of intersectionality in the conduct of research focused on all children with brain-based developmental disabilities, including children from historically marginalized communities. 

In the early stages of Phase 2, we will form advisory committees to guide our work in Indigenous Health as well as in EDI and health equity. We will be intentional in hiring people with lived experiences and unique professional skills in EDI-DI, Indigenous health, and health equity in relation to POR, IS, and KM. 

Working with our Training & Capacity Building Program, we will ensure the EDI-DI lens is at the forefront within the network’s activities and develop a certificate course on the application of EDI-DI. We have begun to develop a “learning pathway” that prioritizes core training and addresses learning gaps for the entire network.  

HOW WILL YOUR PROGRAM MEANINGFULLY ENGAGE PATIENT-PARTNERS? 

ND: One of our goals as a program is to ensure CHILD-BRIGHT diversifies its representation of equity-deserving groups such as patient-partners, trainees, researchers, and participants across our network. In Phase 2, we will collaborate with our Citizen Engagement team to create and build relationships with people and communities who are currently underrepresented in our network.  

TELL US MORE ABOUT YOU. WHAT MOTIVATED YOU TO TAKE ON THIS LEADERSHIP ROLE WITH CHILD-BRIGHT? 

ND:  Reducing health disparities by improving allyship, agency, access and systems has always been a huge motivator for me. Through my research, I aim to understand the mechanisms of injury, repair and neuroplasticity of the developing brain following stroke. I’m highly committed to ensuring such advances in research translate in a clinically meaningful way and touch the lives of all individuals impacted, including those in marginalized communities, which is why I believe the work we’re doing in the CHILD-BRIGHT EDI-DI Program is so important. I’m highly engaged with patients and families and have taken on multiple EDI-DI leadership roles at SickKids and in the pediatric neurology and stroke research communities at the national and international levels. These activities have been rewarding and motivating. 

My involvement with CHILD-BRIGHT began with the Stimulation for Perinatal Stroke Optimizing Recovery Trajectory (SPORT) research project, where I was a site Principal Investigator. Then, in 2020, I co-led a workshop for the network’s executive and central office teams called “Unlocking the Power of Allyship”, which was followed by a workshop on “Understanding and Unlearning Implicit Bias”, before I accepted the position of Director of EDI-DI. 

WHY IS IT IMPORTANT TO FOCUS ON EDI-DI IN PATIENT-ORIENTED RESEARCH NOW? 

ND: Indigenous Peoples, people with disabilities, racialized people, the LGBTQQIA2S+ (Lesbian, Gay, Bisexual, Transgender, Queer and/or Questioning, Intersex, Asexual, Two-Spirit, and other affirmative ways people choose to self-identify) community, and other equity-deserving groups continue to be confronted by the effects of colonialism, systemic racism, biases, and inequities in health care. We know that the effects of health disparities are magnified by the intersection of multiple oppressions, which also exist within research.  

In order for our research to have its fullest impact possible, we need to address these inequities and reach those children, youth, and families who are most affected by the lack of social justice and health equity. We believe that patient-oriented research can offer a path towards ensuring equity by way of ongoing engagement with our patient-partners and Indigenous communities, including supportive and inclusive leadership, dedicated resources, accountability, and transparency. 

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

ND: I am excited to see the results of the culture shift we are undertaking. I hope that by creating both “safe” and “brave” spaces for us to learn from one another, we will increase our understanding of each other in a global community sense. This will provide a foundation for the substantial work that we are setting out to do and improve the impact of our patient-oriented research.  

As one of the first steps towards this culture shift, many of our network members completed a four-part EDI-DI workshop this summer. I am already seeing signs of increased knowledge and personal growth. You can see “lightbulb moments” happening by observing people’s faces, their eyes, their tears, by listening to what is said and left unsaid. It’s all very telling and makes me hopeful for the journey we are all embarking on.  

Thank you, Noma, for this insight into the EDI-DI Program!  

If you are interested in learning more about the EDI-DI Program, please reach out to our EDI-DI Program Coordinator at edi-di@child-bright.ca.  

Learn more about our other Phase 2 programs: 

Get to know our Implementation Science (IS) Research Program 

Get to know our Knowledge Mobilization (KM) Program 

Get to know our Training & Capacity Building (T&CB) Program 

Get to know our Citizen Engagement (CE) Program