After more than six years of refining its approach to patient engagement, CHILD-BRIGHT has formed strong relationships with youth and parent-partners across Canada. In turn, our partners have developed expertise in consulting with patient-oriented research projects focused on childhood brain-based developmental disabilities.
We’re now pleased to announce the launch of the CHILD-BRIGHT Lived Experience Consultation Service for researchers external to our network looking to engage CHILD-BRIGHT partners with lived experience in their own research projects.
The consultation service will be offered through one of three avenues, depending on the needs of the research teams, in English and in French:
Teams looking to incorporate the perspectives of youth with lived experience of a brain-based developmental disability (ages 14-29) will be invited to work with our National Youth Advisory Panel (NYAP). CHILD-BRIGHT’s NYAP, composed of youth members who have lived experience with a brain-based developmental disability, has provided a consultation service to Canadian researchers working on childhood disability research projects since 2021.
Teams looking to incorporate the perspectives of parents, caregivers or family members (ages 30+) of a child with a brain-based developmental disability will be invited to work with our CHILD-BRIGHT Citizen Engagement Council (CEC). The CEC is primarily composed of parents of children with brain-based developmental disabilities and other knowledge users. Since 2016, it has provided guidance on embedding partners with lived experience in all network projects and activities, to ensure authentic and meaningful engagement. As of 2023, CHILD-BRIGHT is now opening this consultation capacity up to research teams working in childhood disability across Canada.
Finally, teams may also consult with both NYAP and CEC members, depending on their needs.
“Our CEC and NYAP members, by means of their lived experience as youth with brain-based developmental disabilities, or as parents or caregivers of children living with brain-based developmental disabilities, have accrued a wealth of knowledge in the patient-oriented research sphere, both because of their lived experience, and because of their time partnering with CHILD-BRIGHT. We’re extremely enthusiastic about putting that knowledge to good use with the CHILD-BRIGHT Lived Experience Consultation Service,” shared Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement.