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!

Two heads are better than one for CHILD-BRIGHT’s National Youth Advisory Panel

In a first for our network, not one but two of our youth members are taking the helm of the CHILD-BRIGHT National Youth Advisory Panel (NYAP). Current chairperson Logan Wong will be joined by long-time NYAP member Hans Dupuis as co-chair for the panel’s next term, which runs from 2022 to 2024. 

In addition to his work as NYAP co-chair, Logan Wong is a social worker with a particular interest in health care policy, working with youth and within the equity, anti-oppression, and anti-racism sector.

The past two years have been a whirlwind for the NYAP, and especially so for Logan: “As chairperson, I have been able to represent the NYAP on more projects than ever, including as part of the network's steering committee and at a collaboration with Autism Canada, formally the Canadian Autism Spectrum Disorder Alliance,” he shared. Early in his mandate, the NYAP launched its consultation service, in which the youth members provide advice to Canadian researchers working on childhood disability research projects. 

At the same time, our youth members were contending with the many impacts of the COVID-19 pandemic. “The pandemic taught us all how to adapt to the adversity that comes with uncertainty,” Logan said.  “That’s the lesson I will bring with me into this next mandate as co-chair. I am incredibly proud of the panel for how they adjusted to a new way of working and a new way of life, all while remaining passionate about advocating for people like ourselves with brain-based developmental disabilities.” 

NYAP Co-Chair Hans Dupuis, who lives in Montreal, has worked for Air Canada since 2017. He is an avid manga and graphic novel reader and enjoys live-action role playing.

This shift in the NYAP governance structure will allow the co-chairs to share responsibilities and workload and provide a second perspective to decision-making within the panel. “After over four years as part of the NYAP, I’m excited to take on a more active role and do my part in the network to help others with brain-based developmental disabilities or autism,” explained Hans. “As co-chair, I will be able to better guide our monthly meetings and support Logan during this mandate.” As a bilingual francophone youth member, Hans will also bring some linguistic diversity to this new role as co-chair. 

Together, Hans and Logan will guide the NYAP and its members as the network moves into its Phase 2. The panel will retain its focus of advising CHILD-BRIGHT’s research teams on how to optimize youth engagement. With this in mind, the youth members have started developing a toolkit on best practices in patient engagement and patient-oriented research for teams to incorporate at the start of their implementation science research projects.  

“I am proud of the work we have done so far within the network and beyond and I look forward to sharing this role with Hans for the next two years to see how much more we can accomplish as a panel in the future!” Logan concluded. 

Are you a Canadian youth with a brain-based developmental disability? The NYAP is recruiting!

CHILD-BRIGHT youth helps make Project 2050 accessible for all

In November 2021, we announced that our Jooay App research project had teamed up with the Earth Rangers organization to launch Project 2050: Climate-friendly habits to change the world!

Jooay and Earth Rangers reached out to CHILD-BRIGHT’s National Youth Advisory Panel (NYAP), which offers an innovative consultation service to Canadian researchers working on childhood disability research projects, to help ensure Project 2050 is accessible to, and inclusive of, children with disabilities. NYAP member Gillian Backlin worked with the team to provide an accessibility review of the Project 2050 website.

A national movement powered by Earth Rangers in partnership with Jooay, Project 2050 empowers children with the knowledge and skills needed to tackle climate change. It teaches children and youth that our habits can have a big impact on the planet, and that by working together, we can build a more climate-resilient future. It was therefore important to the project team that its website be accessible to all children and youth, including those with disabilities.

Gillian, who has completed a previous NYAP consultation, was a natural fit for this particular project. “I’m trained in technical writing and therefore have knowledge in information architecture and how things might make more sense to the end user,” she explained.

The nature of each NYAP consultation can vary depending on specific research project needs. For Project 2050, Gillian met with the team via Zoom, where they requested she review a list of items on the website. She went through them with CHILD-BRIGHT Citizen Engagement Coordinator Corinne Lalonde and submitted their feedback. They then had a follow-up meeting with the project team to discuss their findings. “It was a great experience!” Gillian shared. “I felt that my feedback was valued and incorporated into the results.”

Corinne also had the opportunity to explore the website with her son: “My almost six-year-old was delighted to receive his very own official Earth Rangers card in the mail! We looked at the website and he was immediately drawn in by the challenges and rewards. He found them fun and learned a lot about healthy habits (which made his mom very happy too!).” 

“It was a really great experience working with Gillian and the team on this project,” Corinne added. “It was interactive and interesting, and we felt that we were well supported throughout.”

The Jooay team couldn’t have agreed more: “Gillian provided valuable feedback on our accessibility project,” they emphasized.

“We’re partnering with Earth Rangers to advise on accessibility and the inclusion of children with disabilities in Project 2050, and to make sure that their website is accessible for children with disabilities. Project 2050 encourages kids across Canada to make climate-friendly habits part of their life,” the team wrote to us. “With her professional and lived experiences, Gillian assessed the Earth Rangers website carefully and sent us her detailed feedback.”

You (and your kids!) are invited to check out the results of the NYAP consultation by viewing the Project 2050 website.

How the NYAP shaped a study about youth mental health during COVID-19

In October 2020, CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) launched an innovative youth consultation service, offered to Canadian researchers working on childhood disability research projects. NYAP members Gillian Backlin, Claire Dawe-McCord, Logan Wong and Hans Dupuis consulted with the “Nothing without us: COVID-19 policy responses to improve mental health of youth with disabilities and their families” study team between March and December 2021. Gillian Backlin served on the project’s advisory council as a youth representative.

Download the infographic

The “Nothing without us” project, co-led by CHILD-BRIGHT members Keiko Shikako and Jennifer Zwicker, and affiliated with the University of Calgary, was designed to identify COVID-19 policy responses that are inclusive, equitable, and evidence-informed to meet the mental health needs and promote well-being for Canadian youth with disabilities and their families.

To do so, the study team conducted interviews with youth with neurodevelopmental disabilities to understand how the COVID-19 pandemic has impacted their mental health and their experiences accessing services during the pandemic. After filling out a short online screening questionnaire, youth had the option to participate in a follow up phone/Zoom interview or another online survey.

The research team approached the NYAP to consult in this project in two ways: an individual consultation with Gillian, who was on the study’s advisory council, and a group consultation with Logan, Claire, and Hans, who all reviewed the survey.

“I was interested in participating in this project because I believe the COVID-19 pandemic has had serious impacts on youth mental health and that this is an important area of research to develop further,” Claire shared. “Furthermore, I believe that youth involvement in tools for peers is extremely impactful.”

NYAP members gave feedback on a range of survey elements, including the content of the questions, accommodation and accessibility considerations for youth participants, the survey length and design, and the mode of distribution. Gillian participated in a video story about her experiences during the pandemic. And Claire took part in an advisory council workshop in April 2022 to provide feedback on the study findings. 

“The consultation enabled us to get practical feedback on improving the plain language version of the COVID-19 survey and interview guide aimed at determining the experiences of youth with neurodevelopmental disabilities and their families in accessing services and their mental health needs during the COVID-19 pandemic,” the “Nothing without us” team reported. “The NYAP also provided feedback to help us ensure that our survey was as accessible as possible.”

“We’d recommend the NYAP’s consultation service to researchers, given the ease of the consultation process and the members’ helpful advice that reflected the needs and lived experiences of youth with neurodevelopmental disabilities.” 

Visit the project website to learn more about the “Nothing without us” study.

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 

Getting to know our Phase 2 Programs: Implementation Science Research

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 Implementation Science (IS) Research Program team will focus our research to better understand how evidence generated in Phase 1 can be systematically applied in routine practice to improve quality and effectiveness of health services. To do so, Phase 1 Scientific Co-Director and Research Program Lead Steven Miller will be joined by Janet Curran as our IS Research Program Co-Leads in Phase 2. 

Steven Miller
CHILD-BRIGHT Scientific Co-Director, Principal Investigator & Implementation Science Research Program Co-Lead
Chief of Pediatric Medicine, BC Children’s Hospital
Head, Department of Pediatrics, University of British Columbia

Janet Curran
CHILD-BRIGHT Implementation Science Research Program Co-Lead
Professor, School of Nursing, Dalhousie University
Research Chair in Quality and Patient Safety, IWK Health Centre

We sat down with Steven and Janet to learn more about the IS Research Program’s plans for Phase 2: 

WHAT IS YOUR PROGRAM’S MANDATE? 

Janet Curran: In Phase 2, we will study how to bring novel, evidence-based interventions to our health care and community systems. Our ultimate goal is building a knowledge base that will provide guidance on how to adapt, modify, and customize strategies to work more effectively in hospitals, rehabilitation clinics, homes, communities and more.  

Bringing evidence-based interventions from a research setting into the real world is a substantial challenge. Implementation science is a field of research that studies how such an intervention will interact with “real-world” settings with the ultimate outcome of understanding what needs to be in place for the intervention to succeed in practice and at scale. 

Steven Miller: Our primary goal is conducting implementation science research to promote the uptake of evidence generated from Phase 1 of CHILD-BRIGHT, as well as evidence-based tools that were used in Phase 1, to improve health processes and outcomes for children with brain-based developmental disabilities and their families.   

Implementation science is a relatively new field of study; the intersection of implementation science and brain-based developmental disability is even less developed, so there’s a real opportunity for us here to build capacity and move this research forward for and with children and families.  

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

SM: Building on the work of CHILD-BRIGHT’s research projects in Phase 1, we will conduct 10 implementation science research projects in Phase 2. We will research how to implement new practice guidelines (around the use of constraint-induced movement therapy for kids with hemiplegic cerebral palsy, for example), eHealth technologies (like cognitive-based video game training), and practice roles (such as having a nurse navigator accompany parents in the neonatal intensive care unit). 

Additionally, our Prenatal Opioid Exposure and Neonatal Abstinence Syndrome project team will build upon the work they conducted in partnership with 13 First Nations communities in Phase 1 to address the impacts of prenatal opioid exposure on families. In Phase 2, communities will use the data collected in Phase 1 to develop community-specific knowledge mobilization plans. These knowledge mobilization activities will then be evaluated according to local Indigenous systems of health knowledge and values.

Lastly, we are very grateful to be collaborating with the Maternal Infant Child and Youth Research Network (MICYRN) to evaluate the implementation of patient-oriented research (POR). We expect that findings from this work will inform child health research infrastructure needs across Canada. 

JC: We will be guided by several principles in Phase 2. First, everything we do will be patient oriented. Second, we will advance health equity for children with brain-based developmental disabilities and their families through IS and knowledge mobilization (KM). Third, our work will be cross-collaborative across programs. All of our research project teams will consult with the KM, Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI), Citizen Engagement (CE), and Training & Capacity Building (T&CB) Programs to co-develop and conduct projects. Fourth, we will use implementation theories and frameworks to inform all stages of the project design.   

HOW WILL YOUR PROGRAM MEANINGFULLY ENGAGE PATIENT-PARTNERS? 

SM: We are collaborating with the CE Program to ensure that patient-partners are meaningfully engaged on each project in our program. The CE team has compiled tools and best practices from Phase 1 and will make them available as a toolkit for each Phase 2 team as they develop their project. For example, the toolkit provides guidance on how to create clear roles and expectations for both patient-partners and research team members. It also includes tips from patient-partners (youth and adult) and researchers on optimizing engagement based on stakeholder engagement research that CHILD-BRIGHT conducted in Phase 1. We will also work with the CE Program to use our matching tool to match patient-partners to opportunities on a project. We will also work with the EDI-DI Program to ensure that patient-partner opportunities are inclusive and that our projects engage a diverse group of people. 

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

JC: I’m a Professor in the School of Nursing at Dalhousie University, and Research Chair in Quality and Patient Safety at IWK Health Centre. I am also the IS Lead at the Maritime SPOR SUPPORT Unit, and Dalhousie University site lead at Knowledge Translation Canada. My program of research is focused on co-designing and evaluating best practice and policy change interventions to improve transitions in care for patients and families. 

As Steven mentioned above, Canada lacks researchers with expertise in both implementation science and brain-based developmental disability research. I view CHILD-BRIGHT Phase 2 as an opportunity for us to develop that capacity not only for trainees, but also for established researchers and patient-partners.  

STEVEN, WHAT LEARNINGS FROM PHASE 1 WILL YOU BE LEVERAGING IN PHASE 2?  

SM: In Phase 1, I learned how important it is to authentically engage patient-partners in research and all network activities. As a researcher, I have learned a lot from our patient-partners, and I continue to learn. As we move forward into Phase 2, I look forward to hearing how our patient-partners want CHILD-BRIGHT to approach implementation science research so that we can have practices and policies oriented to the patient. 

Phase 1 also taught me how to connect researchers from across the country to mutually learn about the research and health care systems in various provinces and territories. Each region approaches health care differently, and working in a pan-Canadian network affords us the opportunity to learn from each other. My Phase 1 experience highlighted how we are stronger together. 

WHY IS IT IMPORTANT TO FOCUS ON IMPLEMENTATION SCIENCE IN PATIENT-ORIENTED RESEARCH NOW? 

JC: I think that it’s very important that the fields of IS and POR are intersecting in such a deliberate and overt way through the SPOR’s Phase 2 initiative. Ultimately, any new evidence that is incorporated into practice or policy will impact a variety of groups, such as patients or clinicians. And although such groups have been represented in IS research in the past, conducting an IS research project in a POR framework will make the design and findings even more relevant to stakeholders and applicable to the “real world.” Further, we think that many patient-partners will enjoy conducting IS research and their lived experience will be quite valuable. Working on a randomized controlled trial, such as those conducted in CHILD-BRIGHT Phase 1, can be natural for a researcher but abstract for patient-partners who might be unfamiliar with the intricacies of research. In contrast, IS research is designed to resolve much more practical issues and we expect that many patient-partners will be able to apply their lived experience to Phase 2 projects quite naturally.   

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

JC: I am looking forward to working with new trainees, project team members, and patient-partners to guide their learning of implementation science and the value that it can bring to the population that CHILD-BRIGHT has set out to help.  

SM: I am excited to see our community grow and evolve. Looking back, it’s remarkable to reflect on CHILD-BRIGHT’s growth from 2016 to 2022 and we are looking forward to observing new interactions and relationships in Phase 2. Ultimately, we are excited to see how our novel interventions from Phase 1 can eventually be implemented to help children and youth with brain-based developmental disabilities and their families. And, in doing this, build our Canadian capacity for implementation science in this area. 

Thank you, Steven and Janet, for this insight into the IS Research Program!  

If you are interested in the intersection of IS research and brain-based developmental disability, reach out to Research Program Manager Alan Cooper. 

Learn more about our other Phase 2 programs: 

Get to know our Knowledge Mobilization (KM) Program

Get to know our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program 

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

Get to know our Citizen Engagement (CE) Program 

Getting to know our Phase 2 Programs: Training & Capacity Building

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 Training & Capacity Building (T&CB) Program will continue developing capacity in patient-oriented research, with new training opportunities that will emphasize topics related to understanding and applying implementation science (IS) and knowledge mobilization (KM) methods and equity, diversity, inclusion, decolonization and Indigenization (EDI-DI) principles as they intersect with patient-oriented research. To lead these efforts, Phase 1 Scientific Co-Director and Training Program Lead Daniel Goldowitz will be joined by Celia Laur as T&CB Co-Lead. 

Daniel Goldowitz 
CHILD-BRIGHT Scientific Co-Director and Training & Capacity Building Program Co-Lead  
Professor, Department of Medical Genetics 
Senior Scientist, Centre for Molecular Medicine and Therapeutics               
BC Children’s Hospital Research Institute (BCCHR) 
University of British Columbia

Celia Laur 
CHILD-BRIGHT Training & Capacity Building Program Co-Lead                                
Scientific Lead, Office of Spread and Scale  
Women’s College Hospital Institute for Health System Solutions and Virtual Care (WIHV)  
Assistant Professor (Status), Institute for Health Policy, Management, and Evaluation; University of Toronto 

We sat down with Dan and Celia to learn more about the T&CB Program’s plans for Phase 2:  

WHAT IS YOUR PROGRAM’S MANDATE? 

Daniel Goldowitz: The role of the T&CB Program is to design and host opportunities like studentships, fellowships, and mentorships, to meet IS, KM, and EDI-DI training gaps within the network. 

In Phase 1, the Training Program made great strides in training our members in patient-oriented research (POR) and building POR capacity. We did so by hosting webinars and workshops exploring the practical application of POR, offering patient-oriented summer studentships and graduate fellowships, and funding innovative POR approaches using our special award offerings, such as the Training Innovation Fund and Collaborative Mentorship Grant. Externally, we co-created a National Training Entity, which is now supported by CIHR. We also worked with BC and Ontario SPOR SUPPORT Units to create self-paced training modules in pediatric POR. 

Celia Laur: Building on what Dan said, we have three main goals for Phase 2. Firstly, we’ll develop capacity throughout our network so our members can apply the basic concepts of equity-informed implementation science to POR findings to help improve care and outcomes for children with brain-based developmental disabilities and their families. Secondly, we will develop capacity for our members to embed tenets of EDI-DI throughout POR projects to ensure that knowledge mobilization is informed by, and maximally benefits our diverse patient population. Finally, we will develop mentorship initiatives that train our research project teams to develop sustainability plans and implementation strategies to move research findings into practice. 

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

CL: We will create learning and funding opportunities to enhance our approaches to IS and KM and increase our capacity in EDI-DI. These will include webinars, self-paced learning modalities, scholarships, fellowships, mentoring, and coaching strategies. They will be tailored to relevant audiences and adapted to different competency levels. We will also leverage existing resources and collaborate with other organizations to develop training outputs that can be widely shared and disseminated across all SPOR entities. 

HOW WILL YOUR PROGRAM MEANINGFULLY ENGAGE PATIENT-PARTNERS? 

DG: The effort of the T&CB Program is guided by a committee comprised of multiple stakeholders who provide a diversity of perspectives. Critical to our approach is listening to the voices of our committed patient-partners who serve on this committee and are integral to developing all the exciting training and funding opportunities that we offer. Looking ahead into the new phase of the network, we are excited to not only cultivate a strong collaboration with the EDI-DI team, but to welcome new patient-partners to the T&CB Program committee to ensure that our efforts better serve historically underrepresented groups.  

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

CL: I’m an early career investigator, implementation scientist and health services researcher, so was very pleased to have the opportunity to work with this national network at a time when they are increasing their focus on putting knowledge into practice. Joining the T&CB Program aligns with my personal interests in capacity building and implementation science and my role with the Office of Spread and Scale at Women’s College Hospital. It also provides me the opportunity, in my own small way, to support children with brain-based developmental disabilities and their families. 

DAN, WHAT LEARNINGS FROM PHASE 1 WILL YOU BE LEVERAGING IN PHASE 2? 

DG: In Phase 1, I think we did an excellent job in training our students, fellows, family members and researchers. In Phase 2, we would like to build on the lessons learned and successes and then move our efforts to the larger community. 

WHY IS IT IMPORTANT TO FOCUS ON TRAINING & CAPACITY BUILDING IN PATIENT-ORIENTED RESEARCH NOW? 

DG: Patient-oriented research is still a very new initiative in the health care system, so continued efforts in this direction will serve to have a larger number of practitioners. With Phase 2, we are introducing IS, KM, and EDI-DI. These may be new concepts to many of our members and to the larger community, so it is important to help folks be aware of what these concepts mean, and how they support our efforts to support kids with neurodevelopmental disabilities.   

CL: To add to Dan’s point, each of these areas are interconnected and complement each other. We want to encourage people to learn about these areas together and see what make the most sense for each team to have the widest impact, particularly for embedding the principles of EDI-DI through the network.  

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

DG: It is like a new journey and therein lies the excitement, like we are on a sailing vessel that we have seen to be seaworthy. We’re now preparing the ship for the continuation of our voyage to exciting new lands. 

CL: To continue Dan’s analogy, I’m excited to be a new passenger on this ship! I’m looking forward to meeting people throughout the network and finding ways for us to all learn together.  

Thank you, Dan and Celia, for this insight into the Training & Capacity Building Program!  

If you have any questions about the plan for the T&CB Program in Phase 2, reach out to Program Coordinator Pierre Zwiegers. 

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 EDI-DI Program 

Get to know our Citizen Engagement (CE) Program 

Getting to know our Phase 2 Programs: Knowledge Mobilization

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 Knowledge Mobilization (KM) Program team will move knowledge across practice and policy by building an infrastructure that will direct evidence to targeted users (patients and families, health care providers, health care decision-makers, and community) using tailored, evidence-informed, user-friendly strategies and by carefully evaluating the impact of knowledge mobilization strategies. To do so, Phase 1 Knowledge Translation Program Co-Leads Keiko Shikako and Connie Putterman will be joined by Stephanie Glegg. 

Connie Putterman 
CHILD-BRIGHT Knowledge Mobilization Program Co-Lead 
Parent and Professional Advocate and Mentor, Instructor and Coordinator for family partnership, engagement and inclusion in autism, neurodevelopmental and mental health research,
Family Engagement in Research Coordinator, Centre for Addiction and Mental Health (CAMH) 
Instructor, Co-Developer, Mentor, Consultant, Family Engagement in Research (FER) Course/Program, McMaster University/CanChild/Kids Brain Health Network 

Keiko Shikako
CHILD-BRIGHT Principal Investigator & Knowledge Mobilization Program Co-Lead
Canada Research Chair in Childhood Disabilities: Participation and Knowledge Translation
Associate Professor, McGill University | School of Physical and Occupational Therapy

Stephanie Glegg
CHILD-BRIGHT Knowledge Mobilization Program Co-Lead
Investigator, BC Children's Hospital Research Institute
& Assistant Professor, Department of Occupational Science & Occupational Therapy
The University of British Columbia

We sat down with Connie, Keiko and Stephanie to learn more about the KM Program’s plans for Phase 2: 

WHAT IS YOUR PROGRAM’S MANDATE? 

Stephanie Glegg: First, I should clarify what we mean by knowledge mobilization. KM refers to both the activities involved in the co-creation of knowledge by researchers and knowledge users, and the use of research results and other knowledge to improve the health care system and its practices to enhance health outcomes. In CHILD-BRIGHT Phase 2, the KM Program and Implementation Science (IS) Research Program will be working together to mobilize knowledge across and beyond the network, with and for diverse knowledge users, including youth and families, health care providers, decision-makers, and community.  

Keiko Shikako: Building on the successful Knowledge Translation Program efforts from Phase 1, we will develop the infrastructure to support nation-wide KM by identifying the best KM practices to use with various groups of knowledge users. We will also augment our current Policy Hub to include new national clinical, family and community Hubs to support collaborative planning and multi-directional knowledge exchange across groups. Finally, as we put evidence-informed KM strategies in place, we will evaluate them systematically, so that we can advance the science of patient-oriented KM.  

Connie Putterman: Adding to this, we will engage knowledge users as active partners in KM throughout all phases of the work, including as planners, co-producers, messaging leaders, and end-user liaisons. To me, KM is all about communication strategies and competencies. It’s all about understanding the audiences you wish to inform and translating that knowledge in ways that are meaningful to them. We also want to ensure that the information is evidence informed, meaning that it comes from a place that has credibility through research and other ways of knowing. 

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

SG: KM, implementation science theory and evidence guide all our activities. We will also draw on network theory, because KM is inherently a social process that is enabled by our connections with one another. The KM Program will work with four key knowledge user groups by establishing Network Hubs: the Patient Hub, Clinician Hub, Policy Hub, and Community Hub. The purpose of these Hubs is to strengthen the relationships and facilitate communication within these specific groups to define priorities and then create opportunities for fluid, constant, and efficient knowledge exchange between the network and these groups. We’ll also consult with project teams in the use of best practices and evaluate our activities to identify what is working well, and where to shift our efforts.  

HOW WILL YOUR PROGRAM MEANINGFULLY ENGAGE PATIENT-PARTNERS? 

KS: The Phase 2 KM advisory committee will include partners with KM expertise from each of four key knowledge user groups in particular: patient-partners (family members and youth), health care and other service providers, decision-makers, and community organizations. The Hub structures we’ll be developing are a joint effort between the KM Program and the Citizen Engagement Program. We’ll also be collaborating with the Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program to ensure that we are using best practices to engage equity-deserving groups, and that our activities resonate with and are informed by these groups. The Hubs are in essence all composed, co-led, co-designed in a participatory approach, bringing the concept of “patient-partners” to community partners and really sharing a vision that we are all equal members around the table—researchers, community members, patients, families, decision-makers, and youth—in the process of co-constructing knowledge and making sure academic research informs and is part of “the real world”. 

CP:  For me it comes from the top down and also the bottom up. For instance, built into the infrastructure of our program is a KM Parent Co-lead (me!). In all aspects of the decision-making at the governance level, I along with other parent-partner colleagues in similar roles will be contributing to those decisions. Our aim for the KM Program is to include other patient/family partners in all aspects of both the new infrastructure as described above, such as the design and the decision-making, and its implementation. When I say bottom up, I mean nurturing and capitalizing on the interest of the community, which will bring value, perspective and clarity in the act of partnering. 

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

SG: I’ve been a member of the CHILD-BRIGHT KT Committee since its inception and have had the pleasure of working with Connie and Keiko in that capacity. I’m an implementation scientist, with 15 years of experience facilitating KM in health care, so this work aligns with my passions. I’ve been involved in implementation and KM planning consultation, and in knowledge product/platform development and capacity-building initiatives through this work, which makes this role a great fit. My doctoral research examined the KM supports in place within pediatric health centres and research institutes across Canada, and patterns of social connections within these organizations that facilitate KM. This leadership role offers a space to apply the learnings from this work, to help the network expand its reach and impact using a holistic lens to mobilize meaningful change. 

CONNIE, KEIKO, WHAT LEARNINGS FROM PHASE 1 WILL YOU BE LEVERAGING IN PHASE 2? 

KS: Our co-leadership model with a parent-partner is one essential aspect that we will continue from Phase 1. We have worked in Phase 1 to develop mutual respect and relationships that are truly the base for participatory action research. The appreciation of perspectives, and trust among the team were invaluable to our co-lead and committee decision-making model. Parent-partners and youth were not only part of our KT committee in Phase 1, but were also part of setting priority research questions, collecting and analyzing data, and shared decisions about ways to use and disseminate information. We plan to continue this approach into Phase 2 and expand on the KM strategies and program evaluation.  

CP: We also learned that with KT and KM, there is a lot of internal advocacy and learning that needs to be done.  This means that among the CHILD-BRIGHT community we need to continue to work for clarity and understanding of what we can and can’t do in a research context.  

WHY IS IT IMPORTANT TO FOCUS ON MOBILIZING KNOWLEDGE ABOUT PATIENT-ORIENTED RESEARCH NOW? 

KS: Knowledge Translation Science as a field of inquiry has been out there for decades now. It has always been important to mobilize knowledge about patient-oriented research, but now we have developed tools, methods, and learned more about the critical aspects of it: true engagement from patients/citizens, the importance of evaluation, and the absolute necessity of listening to the priorities and directions of those who should use the information to guide research priorities. Involving patient and parent-partners as research team members increases the relevance of the research and helps to engage more knowledge users in research. KM is critical in ensuring that the findings of research, and the experiential knowledge of children, families, and health care providers, reaches the people who will benefit from or be impacted by it. If we want to effect real change in the health care system, KM needs to be informed by all the groups involved: from the “end-users” (patients, families) to the ones delivering health care (health care providers and community organizations) up to the ones making decisions about health care systems, budgets, and priorities (decision-makers). 

CP: In addition, the movement of patient-oriented research and engagement in research is still on a forward trajectory. We want to capture the momentum now while we are on an “upswing” and in a new frontier in the health research community. We have also learned from the growing body of evidence that patient/family/youth voices improve processes and lead to better health care outcomes for all.  

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

SG: We’re excited to be collaborating across programs so that the principles of EDI-DI, citizen engagement, training and capacity building, and implementation science can be integrated into everything we do, and hopefully vice versa. There is so much to learn about mobilizing knowledge while being attentive to and including different ways of knowing, including with groups that have been historically and systematically marginalized. It is important that we are finally paying attention not only to who has a seat at the table, but especially who does not have a seat, and we are not inviting them to “our table” but trying to find a way to their table to learn from them. This is the “movement” that is one of the most challenging ones in the “network to movement”, but one step that is absolutely necessary to be able to say we are really mobilizing knowledge across academia, communities, and systems. 

CP:  I am most excited to get out there and spread the word. It is still a bit of an unknown entity that someone from a non-academic setting can contribute and benefit from research in this way. No longer is research meant for the ivy tower. It’s meant for all of us! 

Thank you, Connie, Stephanie and Keiko, for this insight into the KM Program!  

If you have questions about our KM Program, reach out to our Program Coordinator Alix Zerbo. 

Learn more about our other Phase 2 programs: 

Get to know our Implementation Science (IS) Research Program 

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

Get to know our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program 

Get to know our Citizen Engagement (CE) Program 

Getting to know our Phase 2 Programs: Citizen Engagement

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.  

For the past six years, our Citizen Engagement (CE) Program has monitored and enhanced citizen partnerships. In Phase 2, the CE team will continue to do so while assuming leadership nationally in promoting patient-oriented research in child health research and working closely with the EDI-DI Program to engage people who are underrepresented in the network. This important work will ensure that the rights of children with disabilities of diverse backgrounds and abilities are respected. Leading this work is Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement and Chair of the Citizen Engagement Council. 

Sharon McCarry
CHILD-BRIGHT Director of Citizen Engagement
Chair, Citizen Engagement Council

We sat down with Sharon to learn more about the CE Program’s plans for Phase 2: 

WHAT IS YOUR PROGRAM’S MANDATE? 

Sharon McCarry: Citizens—children and youth, patients, parents, family members, caregivers, and health professionals—are at the heart of CHILD-BRIGHT. Our program aims to meaningfully engage people touched by brain-based developmental disabilities to guide the ongoing work of the network.  

Since CHILD-BRIGHT’s beginnings, we have fostered meaningful engagement with youth and families, notably through the creation of our Citizen Engagement Council (CEC), composed of youth and young adults with brain-based developmental disabilities, parents of children with brain-based developmental disabilities, and other members, including researchers and health professionals. The CEC launched multiple measurement strategies to understand the engagement and partnership experiences of our network members. We created a Parent Liaison role to guide and support our parent-partners and spaces co-designed by and for youth with lived experience of brain-based developmental disabilities to be heard in research by developing our National Youth Advisory Panel.  

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

SM: As we build on our successes from the past six years, a big priority for CE will be engaging citizens from equity-deserving communities. We recently recruited new youth and we are also planning on leveraging current relationships with our members and the EDI-DI team to form new connections and build relationships with new organizations, community groups, and people living in rural environments. 

In Phase 1, we developed several resources from lessons learned to enhance patient-oriented research.  We will work with our project teams so they can incorporate these lessons at the start of their implementation science research projects, such as the tips that were developed out of responses to our stakeholder engagement study. These resources will also become part of a toolkit to support capacity building for investigators in child health research institutes and centres across Canada. 

We’ll also collaborate with the Training & Capacity Building Program to train our members in new concepts that are key to our Phase 2 work, including implementation science, knowledge mobilization, and equity, diversity, inclusion, decolonization and Indigenization, so they can fully and confidently engage with our network. 

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

SM: I’ve been a passionate community advocate for families living with autism spectrum disorder and brain-based developmental disabilities since 2007 and I am committed to making meaningful and significant change in policies and services for the disability community. I initially joined CHILD-BRIGHT in 2018 as a parent-partner and member of the Strongest Families ND Parent Advisory Committee. Then, in 2021 I took on the role of Director of Citizen Engagement and Chair of the Citizen Engagement Council. I’m excited to be at the helm of the CE Program, working with our amazing CEC at such a pivotal time for the network, as focus turns to becoming a movement for change for children, youth and families.  

WHY IS AUTHENTIC PATIENT-PARTNERSHIP SO IMPORTANT FOR RESEARCH?  

SM: As a network falling under Canada’s Strategy for Patient-Oriented Research (SPOR), CHILD-BRIGHT has been at the forefront of a shift in health research. We are conducting research ‘with’ or ‘by’ patient, youth and family partners, as well as other network members, instead of ‘for’ them. This approach is intended to promote a better health system and better health outcomes.  

In order to fully realize our mandate, and as we strive to align with the disability community’s mandate of “nothing about us without us”, it’s crucial that we create and maintain ever stronger connections with patients, youth, families, caregivers, and the community at large.   

WHAT LEARNINGS FROM PHASE 1 WILL YOU BE LEVERAGING IN PHASE 2? 

SM: We can learn a lot from our first round of onboarding network members. In Phase 2, we’ll be especially focused on clarifying roles and expectations for our patient-partners involved at the project, committee and network levels. We hope this will ensure early engagement of all our members in the research process. In Phase 1, we also developed compensation guidelines, which we will provide to patient, youth and family members involved in our research and network efforts right from the get-go.   

Thanks to the three-part stakeholder engagement study conducted in Phase 1, we were able to gather a lot of valuable information that we can act on to enhance the engagement experience of our network.   

For example, we learned about the need to develop relationships among patient, youth and family representatives and research team members in informal ways. Closed or smaller group conversations and coffee chats are great for this!  

We’ll also emphasize effective and ongoing communication to clarify project goals and allow network members to stay actively involved. Regular check-ins with members during each phase of the research process will be a big part of that communication, as will offering accommodations and flexibility around people’s schedules and methods of participation in committee or project activities. 

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

SM: I’m most excited to see research culminate in changes to policy and practice for children, youth, and families with brain-based developmental disabilities! For the CE Program specifically, I’m looking forward to increased cross-collaboration between programs, looking at the terminology we use to ensure our language truly represents all our members, updating our compensation guidelines, and more. I’m optimistic about what our network can accomplish when we work together to bring about real change. 

Thank you, Sharon, for this insight into the Citizen Engagement Program!  

Consult the list of current opportunities to get involved with our network here. If you’re interested in participating in the Citizen Engagement Program, reach out to Citizen Engagement Coordinator/Project Manager Corinne Lalonde. 

Learn more about our other Phase 2 programs: 

Get to know our Implementation Science (IS) Research Program 

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

Get to know our Knowledge Mobilization (KM) Program 

Get to know our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program 

Announcing CHILD-BRIGHT Phase 2!

We are happy to share that CHILD-BRIGHT’s application to the SPOR Networks – Knowledge Mobilization and Implementation Science competition was successful! In total, the CHILD-BRIGHT Network will receive $3.75M from CIHR over four years which, combined with partner matching funds of $5.27M, will finance our work from 2022-2026. This will help us grow from Network to Movement as we realize our mission for Phase 2: 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.

This is great news for the approximate 850,000 children in Canada living with brain-based developmental disabilities and their families, as well as individuals at high risk for a brain-based disability.

How will we achieve our mission? 

During CHILD-BRIGHT Phase 1, from 2016 to 2021, we developed novel interventions to improve the health outcomes of children with brain-based developmental disabilities using child and family-focused approaches. We did this to optimize their development, as well as to identify ways to deliver more responsive and supportive services to them and their families.

View examples of our Phase 1 accomplishments here

Thanks to our patient-oriented research approach, we made great strides and created positive change for these children and their families in Canada!

In CHILD-BRIGHT Phase 2, from 2022 to 2026, we will focus on equitably mobilizing and implementing this knowledge.

Building on our initial efforts, we intend to augment our emphasis on equity, diversity, inclusion, decolonization and Indigenization (EDI-DI), and further shape our patient-oriented research, implementation science agenda, and knowledge mobilization efforts. We will do so by meaningfully engaging key people, paying careful attention to those who may experience differing health care needs due to socio-demographic factors, or whose voices have been historically excluded.

• What is knowledge mobilization (KM)?

  Knowledge mobilization refers to getting knowledge to appropriate knowledge users when they need it and in a format that is suitable to them, for uptake.

• What is implementation science (IS)?

  Implementation science is the study of how a novel, evidence-based intervention will interact with real-world settings. The goal is to understand what needs to be in place for the intervention to succeed in practice.

• What is equity, diversity, inclusion, decolonization and indigenization (EDI-DI)?

  Visit our EDI-DI framework for full definitions of equity, diversity, inclusion, decolonization, and indigenization, and to learn more about our commitment to EDI-DI.

What outputs will we generate in Phase 2? 

Using our Phase 2 funding, we will:

1. Study how to bring novel, evidence-informed interventions to the health care and community systems. For this, we will select Phase 1 interventions that can be incorporated into health systems to serve the needs of children, youth, and families.

2. Co-build the infrastructure to spread relevant knowledge to knowledge users, such as children, youth and families, Indigenous and other equity-deserving communities, health professionals, and decision-makers in a targeted fashion, using tools such as podcasts, videos, policy briefings, dialogues, and champions.

3. Train patient-oriented research teams to plan for equitable and sustainable health intervention implementation, spread, and scale.

4. Support ongoing patient engagement in research and governance, and amplify patient voices in decision-making.

5. Build relationships with individuals and communities, and ensure that diverse and culturally appropriate strategies are embedded across the network.

“By expanding our impact, helping to change the child health ecosystem (health care, social services, recreation, education, family and home), and continuing on our current trajectory, 
CHILD-BRIGHT will not only achieve its vision of brighter futures for children with brain-based developmental disabilities and their families, but will also become a movement for change: 

moving patients into research teams, moving research into improved practice and policy, 
and moving children and families forward to brighter futures.”

— CHILD-BRIGHT Executive

How will the infrastructure of the network support this? 

In Phase 1, we built the necessary infrastructure and teams to support our four patient-oriented programs in research, training, knowledge translation, and citizen engagement. We will leverage these programs and teams in Phase 2 while channeling our energies towards expanding knowledge mobilization outside the network, integrating implementation science, and embedding principles of equity, diversity, inclusion, decolonization and Indigenization throughout our work.

Our Phase 2 programs are:

• The Implementation Science (IS) Research Program. The IS Research team, co-led by Janet Curran and Steven Miller, will focus our research to better understand how evidence generated in Phase 1 can be systematically applied in routine practice to improve quality and effectiveness of health services. Read more and meet the IS leads.

• The Knowledge Mobilization (KM) Program. The KM team, co-led by Keiko Shikako and Stephanie Glegg, will influence practice and policy by building an infrastructure that will direct knowledge to targeted users (patients and families, health care providers, health care decision-makers, policy makers) using tailored, evidence-informed, user-friendly strategies and by carefully evaluating impact. Read more and meet the KM leads.

• The Training & Capacity Building (T&CB) Program. The T&CB team, co-led by Daniel Goldowitz and Celia Laur, will continue developing capacity in patient-oriented research, with new curricular content that will emphasize topics related to understanding and applying IS and KM methods and EDI-DI principles as they intersect with patient-oriented research. Read more and meet the T&CB leads.

• The Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program. The EDI-DI team, led by Nomazulu Dlamini, will deploy initiatives to ensure that EDI-DI principles are authentically embedded in our four other programs and our governance structure. Read more and meet the EDI-DI lead.

• The Citizen Engagement (CE) Program. The CE team, led by Sharon McCarry, will continue to monitor and enhance citizen partnerships and will assume leadership nationally in promoting patient-oriented research in child health research. The CE team will work closely with the EDI-DI Program to engage citizens (patient-partners and other groups) who are underrepresented in the network. This important work will ensure that the rights of children with disabilities of diverse backgrounds and abilities are respected and met. Read more and meet the CE lead.

Learn how IS, KM and EDI-DI connect with each other in our network, align with our patient-oriented research priorities, and help us increase our focus on equitable impact

Our work would not be possible without our funders. Meet them! 

Platinum Partners ($1M +) 

Gold Partners ($500,000 to $999,000)

Silver Partners ($100,000 to $499,000)

Bronze Partners ($1 to $99,999)

Join us as we embark on this new phase of work! Together, we are changing the landscape of patient-oriented research in Canada to better help children and youth with brain-based developmental disabilities, as well as their families.

CHILD-BRIGHT members lead submission of report to UN Committee on the Rights of the Child on children with disabilities in Canada

Children with disabilities are often overlooked when discussing disability rights and children’s rights. Having research-based data to inform the gaps and services needs for these children in Canada and having them represented and engaged in the international children’s rights context is a unique chance to raise awareness about the specific needs of children. 

The Participation and Knowledge Translation in Childhood Disability (PAR-KT ) Lab, led by Canada Research Chair in Childhood Disability: Participation and Knowledge Translation and CHILD-BRIGHT KT Co-Lead Keiko Shikako, led the submission of a parallel report and subsequent update on children with disabilities in Canada during COVID to the United Nations Committee on the Rights of the Child (UN CRC Committee).

The report, initially published in 2020, outlines issues faced by children with disabilities in Canada based on research evidence and the lived experiences of parents and youth, areas of opportunity in relation to these issues, and recommendations that can begin to address these problems. It also presents testimonials provided by parents of children with disabilities that highlight positive developments as well as areas of opportunity. Learn more about the reporting process below.

Key dates in the reporting timeline

October 2020

Youth from the CHILD-BRIGHT community participate in the UN CRC Committee pre-session where they speak on topics of importance for children with disabilities in the context of children’s rights.

2021

 A UN CRC Committee meeting with the Government of Canada (called a “constructive dialogue”) is planned but is postponed due to the pandemic.

March 2022

Colm and Sharon McCarry in front of Parliament Hill in Ottawa

The Canadian Civil Society Organizations, led by the Canadian Coalition on the Rights of Children, ask several partners to suggest groups of children and youth who should be engaged in a constructive dialogue with the Government of Canada. Youth from the CHILD-BRIGHT community also participate in these consultations with the Civil Society Organizations, including Colm McCarry.

Colm is 18 years old and identifies as an Autistic person with low vision in one eye and ADHD.  He is a full-time student at the Ontario Virtual School completing grade 12, although he lives in Montreal, Quebec. He said:

“This was a very cool experience to be included in a group of young Canadians that were sharing their experiences and I felt heard. I felt we were all listening and so were the organizers. We weren’t just people with a diagnosis being asked to show up as a token group being scrutinized. I felt that there was hope that something positive will come out of our participation and maybe real changes will happen to consider the realness of mental health being an important part of everyone’s overall well-being. Mental health is health care, period.”

— Colm McCarry

May 6, 2022

Download the plain-language infographic

Keiko Shikako takes part in a meeting of a group of Canadian Civil Society Organizations and the UN CRC Committee. “In this meeting we impressed upon the committee that children with disabilities in Canada continue to face discrimination,” Keiko shared. “Data being collected at the federal level only reflects a small part of the reality of children, such as the number of children who have functional limitations, but not the impacts of these limitations on their ability to participate in school, play, and other fundamental areas of development.”

“During the pandemic, these inequalities were highlighted. For instance, in many of our research studies we saw that children with disabilities who receive all their health and rehabilitation services through schools were left with little or no accommodations and services. Considerations were also not taken in the return to school, leaving families and children without essential supports they needed. Mental health services for children with disabilities were also compromised. Families described how the pandemic impacted their child’s levels of anxiety and, in some cases, augmented behaviour issues.”

“Emergency responses should consider the specific needs of children with disabilities and their families. The Government of Canada should take advantage of the efforts being put towards the implementation and monitoring of the Convention on the Rights of Persons with Disabilities along with the Convention on the Rights of Children to maximize opportunities and not duplicate efforts.”

May 17-18, 2022

The UN CRC Committee constructive dialogue with the Government of Canada, which had been postponed due to the pandemic, finally takes place. In this session, the Government of Canada meets with the UN CRC Committee and is asked about concrete actions that they have taken since the last report in 2020. These questions are important, as they will guide the development of a set of “Concluding Observations” for Canada, a document which then comes the reference point for another cycle of implementation of the rights of children. Some of the questions that are presented to the committee members through the PAR-KT lab report and during the session with the committee are asked by committee members to the Canadian government delegation.

How you can engage in the CRC reporting process

As a part of the childhood disability community, here are some steps you can take to engage in the CRC monitoring and reporting process:

• Watch the Canada review session here;

• If you hear anything that you think the PAR-KT lab should follow up on, or that misrepresents the particular needs of children and youth with disabilities, you can write to Keiko Shikako, who will be following up with the UN CRC Committee along with the Canadian Coalition for the Rights of Children to address issues that come up during the review session;

• Commit to reading the Concluding Observations that the UN CRC Committee will make to the Government of Canada after the review. This document can be used as a tool to keep the government accountable to policies that should be implemented to respond to the needs identified. It can also help guide research to respond to the human rights of children with disabilities and can inform clinical practice and community action towards creating a society that respects, promotes, and facilitates the fundamental rights of children with disabilities and their families to live happy, health, playful lives.

How you can learn more about the reporting process and Canada’s contribution

Download the CHILD-BRIGHT Policy Hub infographic

• Read the full parallel report and consult the plain-language infographic summarizing the key points from the report.

• Watch PAR-KT lab member and CHILD-BRIGHT patient-partner Rachel Marten’s TikTok about the May 17-18 meetings

• For more on Canada’s contribution, you can view the List of issues in relation to the combined fifth and sixth reports of Canada, published by the UN Committee on the Rights of the Child, as well as the Consideration of State Reports and List of Issues Prior to Reporting (LOIPR) of all participating countries.

• For more information on how the report process works and how to get involved, you can consult the CHILD-BRIGHT Policy Hub Infographic.

Former CHILD-BRIGHT research assistant headed to World Para Swimming Championships in Madeira

Jessica Tinney at the Canadian Swimming Trials in April 2022. Photo credit: Scott Grant

We’re proud to share that former CHILD-BRIGHT Research Assistant Jessica Tinney will be representing Canada at the World Para Swimming Championships in Madeira in June!

Jessica qualified for the World Championships following the 2022 Canadian Swimming Trials from April 5 to 10 in Victoria, British Columbia, where she received a bronze medal in the 200m Freestyle and broke a Canadian record in the 200m Individual Medley.

A soon-to-be graduate of the kinesiology program at Queen’s University, Jessica joined our Knowledge Translation (KT) Program team in the summer of 2021 to put together our new KT Library, which is an evolving repository for the wide range of KT products created by our network since its inception in 2016.  The library houses many scientific and plain language publications, books and book chapters, reports, webinars, infographics and much more.

Consult our KT Library here

The library was created to further the KT Program’s goal of facilitating exchange and promoting the uptake and dissemination of existing and new knowledge relevant to children with brain-based developmental disabilities and their families—a mission that was a direct inspiration for Jessica when applying to work with CHILD-BRIGHT.

“The [job] description was about disseminating articles to make it so people who the research is actually meant for can read them. I thought that was interesting, based on my background and having a disability and not being able to read or understand the information before I went to school. I thought that'd be really cool,” she said. As part of the KT Library team, Jessica wrote plain language versions of some of the scientific journal articles published by network members and added the various resources and outputs to the library on the CHILD-BRIGHT website.

As a person with cerebral palsy, Jessica’s experiences with medical care have also driven home for her the importance of communicating knowledge in an accessible way to patients. She described going to doctor’s appointments and grappling with complicated explanations provided to her: “I never understood how any of it like related to me or what I needed to get from what they were saying, so I think to have like a resource, something like what we're doing here, would be really helpful to people.”

The time she spent in and out of physiotherapist offices as a youth, in particular, is also how she first found her way to swimming.

“I first started [swimming] because I really, really hated physiotherapy!” Jessica admitted, to the point that as a child she “would refuse to go” to her appointments.

Jessica Tinney

“I was originally in swimming lessons and my mom put me on a team. Then, when I went to my doctor’s appointments, they asked if I did physio, and I said no, I swim this many times a week. They said, ‘Great! Keep doing that and then you don’t have to go to physio.’”

She would begin her competitive swimming career in earnest as a teenager, but “my love for the sport grew from there. That's how I first got into it,” she shared.

After graduating from Queen’s this June, Jessica will be taking a year off school, but is actually considering a return to school the following year to study physiotherapy, equipped with her newfound experience in patient-oriented research.

We’re grateful to Jessica for her contributions to our Knowledge Translation team and wish her the best of luck in Madeira. We’ll be rooting for her and we’re excited to see what comes next!

2022 Training Innovation Fund

CHILD-BRIGHT is proud to launch its 2022 Training Innovation Fund!

The Training Innovation Fund will provide a maximum of $10,000 in funds to facilitate innovative training initiatives that will complement ongoing Patient-Oriented Research activities that focus on childhood brain-based developmental disabilities.

With this opportunity we intend to support the development of innovative tools and resources that develop capacity in the areas of Knowledge Mobilization, Implementation Science, or Equity, Diversity, Inclusion, Decolonization & Indigenization.

Applications are due July 15, 2022

Visit our grant competition page for details, eligibility requirements, and application procedure. Good luck!

Meet 2021 Summer Student: Chloe Janse van Rensburg

This summer, CHILD-BRIGHT also welcomed student Chloe Janse van Rensburg. Chloe participated in the studentship training sessions while working with CHILD-BRIGHT Parent Peer Mentor Carrie Costello and PIUO Family Liaison Laesa Kim on their project, which was funded by a CHILD-BRIGHT Collaborative Mentorship Grant. Their project examines the benefits and drawbacks of asking parents to use their personal networks (such as social media, email, and other connections) to recruit for research.

Here’s what Chloe had to say about the experience:

“I had a wonderful experience working on a CHILD-BRIGHT project this summer. Not only has my knowledge about the research process increased, but my eyes have also been opened to the worth of patient engagement in research.

Prior to working on this project, I did not have any research experience, so having the chance to see the ways in which a project progresses, as well as being able to work with an amazing team, was such a great opportunity. I learned many things, including how to thematically code data, how to identify important things to consider when conducting focus groups, and to value the importance of authentic engagement.

I hadn’t really considered a career in research previously, but after this experience it is definitely on my list of potential career goals. If not a career in research, I will most definitely be able to use some of the things that I’ve learned this summer in other careers! ”

Meet 2021 Summer Studentship Recipient: Claire Dawe-McCord

Working with our READYorNot project as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Claire Dawe-McCord conducted a review to identify key issues and policies that need to be improved relative to the health care transition of youth from the pediatric to adult care settings. She also worked with the project team’s Patient and Family Advisory Group (PFAC) to develop skills in patient-oriented research. She took on a leadership role within this group, co-facilitating meetings, preparing materials, consolidating discussion questions, and incorporating feedback from the PFAC into the team’s work.

Here’s what Claire had to say about the summer student experience:

“The CHILD-BRIGHT Summer Studentship taught me many things. As someone who has previously worked as a youth patient-partner, I have experienced many different kinds of patient engagement, including patient and family engagement in research, but I had yet to be on the other side of the equation. This summer I came to appreciate just how much work goes into creating meaningful engagement. I have come to realize how easy it is, even for researchers with the right intentions, to quickly slip back into the habit of consulting with patients instead of truly engaging.

This summer, I learned that to have “good” patient engagement in research, it is vital to keep open lines of communication between the research team and the patients, families, and caregivers involved. With proper communication, you can ensure that research priorities are set together and that everyone at the table is clear about what is expected of them, whose voice they are representing, and how they should engage with each other moving forwards. I also realized how engagement and partnership cannot be a last-minute thought; it has to be at the heart of your planning from the very first day.

As someone who is hoping to pursue a career in medicine and will likely have to do much more research throughout my life, I am hoping to incorporate my learnings into the care I provide, the research I conduct, and the way that I interact with others.”

Meet 2021 Summer Studentship Recipient: Clara Moore

Working with our CCENT project as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Clara Moore focused on data analysis and visualization and assisted with a meta-analysis of CCENT’s 16 measures administered over an 18-month period to capture outcomes such as stress, mental health, and experience of care delivery. 

Here’s what Clara had to say about the summer student experience:

“I am extremely grateful that I was able to gain such valuable new skills through the CHILD-BRIGHT Summer Studentship Program. Not only did this experience firmly reinforce my passion for patient- and family-centered research, but it also taught me how to engage and collaborate with patients at all points of the research process.

The most important lesson that I took away from this summer was how to create meaningful and authentic partnerships with patients and families. As a researcher it is not enough to simply include a patient or family member as a “partner” on a project. Instead one must carefully consider how a patient-partner can best contribute to the project as an expert and ensure appropriate compensation for their time and knowledge.

As I move forward in my career as a physician, I hope to be able to engage in more patient-oriented research projects. When that day comes, I feel confident that I will be able to authentically include patients and families in each step of the research process and ensure that their expertise is valued in order to produce research that is meaningful and useful for the community of patients that it is intended to serve.”

Meet 2021 Summer Studentship Recipient: Laura Diamond

Working with our CCENT project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Laura Diamond extracted and cleaned data on mental health resource use in parents of high-risk infants four months after leaving the Neonatal Intensive Care Unit. “Cleaning” data refers to removing incomplete or invalid entries from a data set. Laura summarized the demographics and mental health service use of these parents and performed a statistical analysis to identify if any markers from the infant’s NICU admission could predict parent use of mental health services after discharge. Laura and the CCENT team are currently summarizing the findings in a manuscript.

Here’s what Laura had to say about the summer student experience:

“I feel extremely fortunate to have participated in the CHILD-BRIGHT Summer Studentship Program this summer, working with the Coached, Coordinated, Enhanced Neonatal Transition (CCENT) team at the Hospital for Sick Children.

For my research project, I investigated mental health resource use in parents of infants in seven neonatal intensive care units (NICU). Parents of infants in the NICU represent an often-understudied population, despite facing an increased burden of mental illness when compared with parents of full-term, healthy infants. I appreciated the opportunity to spearhead some research in this field, in hopes of ultimately improving the mental health resource access and overall mental wellbeing of this population. Furthermore, with the increase in mental illness associated with the COVID-19 pandemic, conducting this research project this summer only felt more critical.

In addition to conducting the research project itself, I greatly benefited from the CHILD-BRIGHT Summer Studentship Program. Through webinars and workshops, I became more familiar with the tenets of patient-oriented research (POR) and the benefits that such research can have on patient outcomes and experiences. Specifically, I learned that effective POR involves: 1) engaging patients early, 2) ensuring diversity of perspectives (this may mean involving not just patients, but caregivers, parents, siblings, etc.), 3) ensuring recruitment facilitates the involvement of marginalized and hard-to-reach populations, and 4) maintaining compassion when engaging with patient-partners to ensure they are contributing in safe and meaningful ways. These are lessons that I will carry forward with me on my journey as a future clinician and researcher.”

Meet 2021 Summer Studentship Recipient: Eisha Amjad

Working with our Mega Team project members as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Eisha Amjad gained experience conducting research study visits, gathering consent from participants, as well as interacting with study participants and families. Eisha also learned about data collection methods and processes and the importance of incorporating patient-partners in the research study.

Here’s what Eisha had to say about the summer student experience:

“The CHILD-BRIGHT Summer Studentship webinars and training modules were helpful in familiarising myself with key concepts such as the basic principles of patient-oriented research, plain language writing, and the barriers to, and enablers of, public participation in research.

I learned a lot about how critical it is to communicate complex and challenging scientific findings in lay terms to attract public attention. Through the carefully constructed group assignments, I developed the skills to work well within a team and consolidate several different ideas and perspectives. I substantially increased my ability to read and scan scientific materials, as well as paraphrase key findings using lay language. This has greatly aided me in my position as a co-op student at SickKids. I’m able to better interact with children and answer their questions about the research study in which they are enrolled. I am confident that the skills and knowledge I have acquired through this program will continue to help me thrive both professionally and academically.”

Meet 2021 Summer Studentship Recipient: Shi Ping (Linda) Lin

Working with our Mega Team project members as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Shi Ping Lin learned how to conduct research study visits, gather consent from participants, as well as interact with study participants and families. Shi Ping also learned about methods and processes of data collection and the importance of incorporating patient-partners in the research study.

Here’s what Shi Ping had to say about the summer student experience:

“My summer studentship experience working on a CHILD-BRIGHT research project was nothing short of extraordinary! Throughout the term, I had the opportunity to work with an amazing group of researchers, eager participants, and parent-partners. Not only did I arrive at a deeper understanding of what patient-orientated research is and how to engage in active and authentic partnerships with researchers, patients, and health professionals alike, but I was also able to apply it in real time during research assessments.

Through the summer studentship webinars, I was made aware of all the different barriers to patient participation, which made me more mindful when engaging with families. My placement with Mega Team also allowed me to practice administering research measures in a standardized manner in order to collect quality data. Through this experience, I learned how to analyze data and how to exercise sound data maintenance by digitizing a collection of research files. Both the intra- and inter-personal development I’ve had in the past four months allowed me to grow as a person and have more meaningful interactions with others.

I aspire to become a teacher and the summer placement equipped me with the valuable experience of working with children affected by different neurodevelopmental disabilities and how to best care for them. Overall, I’m very thankful for the CHILD-BRIGHT Summer Studentship Program for the memorable experience and for the connection with all the wonderful people I’ve met in the process.”