Child health services research with the people who know best: experiences and lessons from CanChild’s collaborations with families

In the twenty-first century, granting organizations and journals increasingly expect health services research to include the active participation and voices of people with lived experience in studies relevant to their lives. This paper reports the 30-year history of engagement between CanChild Centre for Childhood-Onset Disability Research and families of children with neurodisabilities. We offer a brief background history of how these activities began and report on several programmes of research, knowledge sharing, and implementation that have benefitted enormously from the relationships with families and the insights they have provided on virtually every dimension of our work. We also briefly report on some of our recent formal and informal engagements with young people with lived experience, an aspect of our work that is now being more actively developed. We hope that this overview of one centre’s experiences and lessons learned from active partnerships with “the people who know” will be of value to others.