Family Engagement in Research (FER) Program
The Family Engagement in Research (FER) Program is funded and co-developed by Kids Brain Health Network (KBHN).
In partnership with CanChild and McMaster University Continuing Education, the program is led by a dedicated team of family leaders and researchers in Canada. Working together, the mission is to “advance family engagement in the field of neurodevelopmental disability (NDDs) and child health through equitable training, mentorship, networking, and collaboration initiatives.”
Mobilizing Family Engagement in Research
While many evidence-based supports exist for children with neurodevelopmental disabilities, scientific research needs more ways to address the actual needs of children, their caregivers and families. Without tools to account for their perspectives, research and policy cannot be adequately informed by real-world needs.
Nicola Lewis, CEO of Kids Brain Health Network, addresses the Standing Committee on Science and Research, for their study on Citizen Scientists in February 2023.
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We have an equal number of parents and caregivers and an equal number of [research fellows], typically, taking the [FER] program. When [fellows] become involved in the research themselves, they have a new perspective on how to conduct science and on the importance of the contributions that families, individuals and caregivers can give to the research. The families themselves then feel like they are equal and respected members of a team.”
~ Nicola Lewis, CEO, Kids Brain Health Network |
With an established record of building capacity and leadership in family engagement and patient-oriented research, the Family Engagement in Research (FER) approach has proven to be effective. Since 2009, Kids Brain Health Network has intentionally engaged the families and caregivers of children with neurodevelopmental disabilities to provide their invaluable perspectives. Alongside programs such as FER, KBHN has invested more than $97 million in over 200 projects so that kids with neurodevelopmental disabilities, their families and caregivers can live their best lives.
At the federal level, KBHN takes a leadership role with the FER team from CanChild, advocating for disability policy change that takes lived experience into account. Read more about KBHN’s advocacy with the federal government.
Contact Us
We invite you to join the Family Engagement in Research (FER) community. To learn more about the FER Course, please visit the CanChild website, or contact fer@mcmaster.ca.
If you have any questions about the Kids Brain Health Network National Training Program, or if you want to learn more, we’d love to hear from you. Please contact training@kidsbrainhealth.ca.
