‘Partner with lived and living experience’ is an overarching term referring to any CHILD-BRIGHT research partner who is either 1) a youth or former pediatric patient living with a brain-based developmental disability, or 2) the parent, caregiver, or family member of a child living with a brain-based developmental disability. PWLEs may be involved in our research projects, program committees, or other network activities.

Engagement

‘Engagement’ implies meaningful and active involvement of PWLEs in all areas of research: governance, priority setting, research conduct, and knowledge translation.

• In the CHILD-BRIGHT network, PWLEs are represented in our governance (our committees), in our research projects as co-investigators, and in our training and knowledge translation programs. PWLEs are the most important members of our network.

Patient-oriented research

‘Patient-oriented research’ refers to the continuum of a research project or program that actively involves partners with lived and living experience in all levels of the project, with the goal of improving health outcomes. This research is conducted by a diverse team with all relevant parties, so that the knowledge can be readily taken up and used to improve health systems and practices. Any group or individual interested in the health issue (e.g., young with brain-based developmental disabilities, family members, health care providers, researchers, policymakers, health administrators, community organizations, industries, the public) can participate meaningfully in the research project.

• PWLEs were active participants in setting the research agenda for CHILD-BRIGHT. Together with other key groups, they attended meetings to prioritize research themes, which were subsequently validated by on online survey of over 900 youth and parents with lived and living experience across Canada. During our application for network funding, three parents were principal investigators and dozens of PWLEs were co-applicants on our submission.