2021 Virtual Symposium Discussion: Brainstorming Together on How to Support the Continued Funding of Child Health Research in Canada

How can the CHILD-BRIGHT community rally to support the continued funding of critical child health research in the realm of neurodevelopmental disability? As part of our recent 2021 CHILD-BRIGHT Virtual Symposium, Katie Griffiths, a personal support worker who runs the Patchwork Half Heart community and a parent-partner in our MATCH study, along with Patrick D. Lafferty, who has extensive experience providing strategic planning to organizations, co-facilitated a discussion aimed at brainstorming answers to this question.

“Through my journey I have learned how little research funding there is for children’s health,” Katie Griffiths observed. The time for uptake of this research is also lengthy. On average it takes nearly two decades before a scientific discovery can be adopted into clinical practice. However, as illustrated by the rapid development of the COVID-19 vaccines over the last year, when priorities align and sufficient resources at a local and international level are made available, the research community can address complex problems much more quickly, including ensuring the continued funding of important child health research.

“The opportunities are there,” Patrick Lafferty noted. “The question is how to get the right people in the room to brainstorm […] a model that can be taken to all sorts of constituencies.”

During the symposium brainstorming session, 20 participants raised a variety of topics, including the importance of further enhancing public involvement in the research process, and more broadly publicizing successes to generate awareness. In addition, the participants discussed learning from past successful social media campaigns (such as the ALS Ice Bucket Challenge) to leverage non-traditional funding opportunities and made the case for funding a national diagnostic strategy that would yield financial returns and support further innovative research initiatives. Key takeaways included a call to action to consider unique funding strategies and subsequently engaging committed stakeholders who would move the effort forward.

CHILD-BRIGHT has taken note of these takeaways and is now evaluating the issues raised for future brainstorming sessions, events, and research priorities.

The 2021 report, Inspiring Healthy Futures: A Vision for Children, Youth and Families In Canada, identifies five Interlinked priorities to measurably improve the health and wellbeing of children and youth In Canada. Research is recognized within the framework as a critical contributor to health and wellbeing, but must be integrated seamlessly into Canadian policy and practice to truly influence child health outcomes.  

With this in mind, let’s dream together as we consider the future work of CHILD-BRIGHT. Let’s consider questions never asked and strategies never tried as we continue engaging patients and families, funders, researchers, and key decision makers in this critically important work.

What do you believe we can do to help to continue to fund critical research into brain-based developmental disability in children? Share your thoughts in the comments below.

Announcing the Winners of our 2021 Knowledge Translation Innovation Incubator Grant Competition!

 We are pleased to announce the two winning teams of our 2021 CHILD-BRIGHT KT Innovation Incubator competition: the Let’s go to the Library team and the CommuniKIDS team. Read more about each team below.

What is Let’s go to the Library?

The Let’s go to the Library team will use the KT Innovation Incubator grant to create a digital library containing a series of brief storybooks on different sexuality topics for pre-teens to read alone or with their parents. Youth interviews, child-generated art, and inclusive images will be used throughout the storybooks to promote engagement. Content will be underpinned by the Ontario sexual education curriculum and disability-specific guidelines.

More specifically, the team will:  

• Gather information from target sources and organize it into key themes/topic areas

• Design and develop the storybooks in collaboration with stakeholders, a graphic designer, and a videographer

• Host the storybook on an existing hospital website for easy access to the resources.

Meet the team:

Let’s go to the Library is led by Amy McPherson (Senior Scientist at Bloorview Research Institute and Associate Professor at the University of Toronto) and Christine Provvidenza (Knowledge Translation Lead, Evidence to Care at Holland Bloorview Kids Rehabilitation Hospital).

Other project team members include:

• Alison Engel-Yan (Parent collaborator, passionate advocate for increasing access to sexuality-related resources for children with disabilities and member of the Family Leadership Program at Holland Bloorview)

• Nelson Ainsley and Makumbu Lumbu (Lived experience collaborators)

• Amanda Landry and Charise MacDonald (Occupational therapists at Holland Bloorview)

• Lindsay King (Social worker at Niagara Children’s Hospital)

• Madison Giles (PhD trainee and research assistant)

• Jennie Williams (Enhance the UK, dissemination partner).

What is CommuniKIDS?

The CommuniKIDS team will use the KT Innovation Incubator grant to develop a freely-accessible bilingual trial results communication tool (“CommuniKIDS”) in collaboration with youth and families impacted by different forms of child disability.

More specifically, the project will:

• Work with youth and families to determine what their specific informational needs and preferences are for receiving trial results, including what to communicate (i.e., content), by whom, how, and when this information should be communicated

• Hold workshops with youth and families with lived experience of rare genetic disorders associated with child disability to answer these questions and to co-develop guidance and templates for researchers to use for sharing pediatric trial results with participants

• Obtain and incorporate feedback on CommuniKIDS from trialists and Clinical Trials Ontario (CTO), making sure CommuniKIDS is acceptable for use by researchers and research ethics boards.

Meet the team:

The CommuniKIDS project is led by:

• Nancy Butcher (child health researcher, INFORM-RARE trial methodologist at the Hospital for Sick Children, and Assistant Professor of Psychiatry at the University of Toronto)

• Beth Potter (epidemiologist and Associate Professor of Epidemiology at the University of Ottawa)

• Dawn Richards (Director of Patient and Public Engagement, CTO, who co-led the development of CTO’s trial results tool)

• Maureen Smith (experienced patient engagement leader and advocate)

• Nicole Pallone (patient-partner and parent of a child with a rare metabolic disease)

• Shelley Vanderhout (registered dietitian and post-doctoral research fellow at the University of Ottawa)

• Martin Offringa (neonatologist, child health researcher at the Hospital for Sick Children, and Professor of Pediatrics at the University of Toronto)

• Ami Baba (Clinical Research Project Manager at SickKids).

Congratulations to both winning teams!

We would also like to thank all the applicants of our CHILD-BRIGHT KT Innovation Incubator grant competition as well as our review panel, which was composed of parents, researchers, clinicians, educators, trainees, and youth with expertise in KT research, childhood disability research, occupational therapy, mental health services, communications, and advocacy.

CHILD-BRIGHT Members Join Royal Society of Canada to Publish a Policy Brief on the Impact of COVID-19 to Individuals with Intellectual and Developmental Disabilities

The COVID-19 pandemic and its associated public health restrictions have had a disproportionate impact on the lives of individuals with intellectual and developmental disabilities (IDD). Not only do people with IDD have a greater risk of severe complications and death from the virus, as shown in large-scale studies, but they also face significant short- and long-term consequences of COVID-related public health measures on their mental health and well-being.

To provide evidence-informed perspectives on the impact of COVID-19 to people with IDD, several CHILD-BRIGHT members joined a Royal Society of Canada RSC Task Force on COVID-19 working group. This group, composed of academics and patient representatives, consulted with a cross-representation of stakeholders from across Canada such as youth with brain-based developmental disabilities, self-advocates, and caregivers, to put forward recommendations. These recommendations are intended to support policy makers with evidence to inform their decisions. The findings are consolidated in a report titled Time to be Counted: COVID-19 and Intellectual and Developmental Disabilities, now available for download in English below, and in French.  

CHILD-BRIGHT members involved in this task force included:

To gather the perspectives and recommendations of youth and young adults with lived experience with a brain-based developmental disability, the working group consulted CHILD-BRIGHT’s National Youth Advisory Panel members. Meet these members here:

“People with intellectual and developmental disorders have been further marginalized during the COVID-19 pandemic," said CHILD-BRIGHT members and co-chairs of the working group, Dr. Patrick McGrath and Dr. Annette Majnemer. "This report points toward a better, more inclusive Canada. It is time for Canada to rise up, in ways that count." 

Dreaming Together of the Future of Patient-Oriented Research at the 2021 CHILD-BRIGHT Virtual Symposium

On Wednesday, May 26, health professionals, researchers, research staff, patient-partners, parent-partners, and family members came together for our 2021 CHILD-BRIGHT Virtual Symposium. A total of 192 participants from these different stakeholder groups attended our online event to explore the future of patient-oriented research (and brainstorm solutions to patient engagement issues) in the field of brain-based disability in children.

Nine CHILD-BRIGHT research teams kicked off the event with video updates to share  their accomplishments and hopes for their research moving forward.

Watch a recording of these project updates, along with the Q&A periods:

Following this lively session, participants were invited to “drop in” to virtual poster sessions organized along five major themes: Community-Engaged Research & Partnership, Clinical Research & Supports, Knowledge Translation & Exchange, Training & Capacity-Building, and COVID-19: Research & Virtual Care.

Participants also provided their perspectives in two brainstorming sessions throughout the day, offering input on two patient engagement issues:

1. How to make consent and assent forms in child health research appropriate to an inclusive audience, and

2. Strategies that the child health community can employ to better advocate for additional funding opportunities that will secure brighter futures.

Thank you to everyone who attended for the enriching and fruitful discussions. Stay tuned to hear more about the results of one of our brainstorming sessions in the coming weeks!

Want to make sure you’re in the loop for future CHILD-BRIGHT virtual events? Follow us on Twitter and Facebook and stay up-to-date on all our news and events!

CHILD-BRIGHT Youth Advisory Panel Completes First External Consultation

In October 2020, CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) launched an innovative youth consultation service. Youth member Gillian Backlin accepted the first consultation mandate external to CHILD-BRIGHT and shares her experience consulting with the Partnering for Pain and iOuch research teams in the winter of 2021, as well as her thoughts on why it was a valuable experience for all involved.

“I’m happy to share that the NYAP has completed its first consultation!” says Gillian Backlin. “Our consultation service provides researchers with the opportunity to connect with youth with brain-based developmental disabilities, like myself, who offer first-hand knowledge and experience to their research studies.”

In fall 2020, the Partnering for Pain and iOuch research teams approached the NYAP with a request for consultation focused on virtual care during the pandemic as part of a project funded by the Ontario SPOR SUPPORT Unit. The knowledge mobilization project aims to ensure equity and inclusion in virtual care and identify best practices to support diverse populations of youth with chronic pain. The team’s objectives were:

• To facilitate collaborative dialogue regarding virtual care recommendations for diverse pain populations, including youth with pain and complex medical care needs, and their families.

• To engage diverse stakeholder groups in contributing to recommendations for virtual care best practices in pediatric chronic pain.

• To share findings related to identified virtual care recommendations with relevant stakeholder groups and explore how these recommendations could be tailored to best address the needs of vulnerable pain populations.

The Partnering for Pain and iOuch research teams presented a poster on their knowledge mobilization project at the 2021 CHILD-BRIGHT Virtual Symposium.

 To help reach these objectives, the team was looking to consult with a young adult living with pain and complex medical care needs (including brain-based developmental disabilities) to co-design and co-lead a collaborative dialogue session with youth to explore their experiences with virtual care.

“Following the review of their consultation service request, my fellow NYAP members and I decided that I would be best suited to meet with this team,” notes Gillian. “As someone who deals with chronic health issues that now have to be treated virtually, I was able to provide insight from my own personal experience that resonated with other participants. I was really excited to get the opportunity to use my experience to help others.”

This study team brought together many different groups for several virtual sessions, such as Black youth living with painful sickle cell disease, Indigenous youth with chronic pain, youth with pain and complex medical needs (including those with brain-based developmental disabilities), as well as their family members and healthcare professionals. “I took part in the planning meetings that  brought these many stakeholders together, joined a call with parents of youth with complex care needs, and helped facilitate a discussion with youth with complex care needs,” explains Gillian.

“ “Gillian’s involvement was crucial. She helped us develop both the content and structure for our virtual engagement sessions. Her feedback was also critical in ensuring the sessions were accessible for youth living with complex medical needs across Canada.” ”

— Project co-leads Dr. Katie Birnie and Dr. Jennifer Stinson, in the post-consultation feedback survey that completes each NYAP consultation service contract.

“On my end, I found the team’s genuine interest in creating a fruitful and accessible discussion for all made this process comfortable and enjoyable from start to finish,” says Gillian. “The great thing about this study was that it was an open conversation that allowed for the sharing of experiences and different points of view. It is my hope that this feedback will encourage care providers to continue to do their part in ensuring that the virtual care patients are receiving meets their specific needs.”

 Learn more about the project here.