Good morning, and thank you to the committee for inviting me to speak with you today.
My name is Nicky Lewis and I am the chief executive officer of Kids Brain Health Network.
Kids Brain Health is a Canadian national network that puts science to work for children with neurodisabilities and their families. These are lifelong conditions characterized by impairments in cognition, communication, behaviour and motor skills resulting from abnormal brain development. We support the development of cutting-edge research and the implementation, scale and spread of evidence-based solutions.
With funding from the federal government’s networks of centres of excellence program and equally matched funding from many other partners, we have invested more than $77 million into over 200 projects and research initiatives so that kids with disabilities and their families can live their best lives.
Kids Brain Health’s focus is directed upon proven solutions in early identification, early interventions, effective treatments and family support.
Today, I will speak with you about one of our programs. It is the family engagement in research program, which is better known as the FER program. FER recognizes parents and caregivers as equal partners in all phases of the research process, from research question design to data collection and analysis, and disseminating the findings into practice. FER is funded by Kids Brain Health and co-led by parent leaders and pediatric health service researchers at CanChild centre for child disability research at McMaster University.
I would like to introduce, in the audience, Dr. Andrea Cross, assistant professor from CanChild, and Ms. Connie Putterman, a parent partner. They are two of the codevelopers and coleaders of the FER program.
The FER program includes an evolving suite of training courses, knowledge mobilization and mentorship initiatives. It is led by citizen partners and researchers, and it is rooted in the shared values of co-creation, collaboration and respect for the different types of knowledge and experiences.
The inaugural FER course is a fully accredited 10-week online course for researchers, trainees and family partners. To date, 300 graduates from 14 different countries have taken the course. Half of those are parents and caregivers. Many have advanced to become leaders across institutions and networks in neurodevelopmental disability, child health, mental health and women’s health research.
We are currently in the process of adapting the course for youth and self-advocates with lived disability experience, frontline practitioners and health care providers. We are also expanding the course to ensure availability to francophone researchers and families. So far, three francophone course instructors have been trained and a French FER course will be launched this year. More recently, we launched an advanced 10-week online training course for FER graduates, called the “FER leadership academy”, with the aim of being a springboard for future FER leadership development in Canada.
The FER program has become a nationally and internationally recognized forum for training and mentorship. The program is creating a rising movement to embed best practices of citizen science into neurodevelopment and child health research institutions and networks across Canada and abroad. While the program has grown through several partnerships, further investments are needed to sustain commercialization nationally and internationally.
Over the years, we have seen the positive contributions that equitable and inclusive training has on the research for kids with neurodevelopmental disabilities and their families. Kids Brain Health is proud to fund programs like FER that allow families and caregivers with real-life experiences to provide researchers with context that they would otherwise not have, therefore producing outcomes that are much easier to implement and more likely to provide value for families.
Canada has an opportunity to be a global thought leader in citizen engagement in conducting health research and implementation for the betterment of our children and future generations. Kids Brain Health has seen success with programs that can be scaled and have the potential to be equally impactful in other areas of science and research. Federal programs, such as the strategic science fund, can play a vital role in unlocking and further enabling these kinds of partnerships.
We stand ready to help this committee, the government and the scientific community in Canada with inclusive and equitable citizen engagement in research.
Thank you very much for your time. I look forward to your questions.