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.