'Patients' are individuals with a health issue and/or the caregivers (family and friends) of individuals with a health condition.
- For CHILD-BRIGHT, a child with a brain-based developmental disability is considered a ‘patient’ but because many patients are either too young or do not have the cognitive or language abilities to engage as members of the research team, parents or close family members who can represent the patient experience are also considered ‘patients’ within our network.
“Patient engagement” implies meaningful and active involvement of patients in research: governance, priority setting, conducting the research and knowledge translation.
- In the CHILD-BRIGHT network, youth and young adults with disabilities and parents of individuals with disabilities are represented in our governance (all our committees), in all our research projects as co-investigators, and in our training and knowledge translation programs. Patients and parents are the most important citizens of our network.
“Patient-oriented research” refers to the continuum of a research project or program whereby patients are engaged partners, and the research is addressing patient-identified priorities with the intention of improving patient outcomes. This research is conducted by a diverse team with all relevant stakeholders involved so that the knowledge can be readily taken up and used to improve health systems and practices. Any stakeholders or citizens that have an interest in the health issue (e.g. patients, family members, health care providers, researchers, policy makers, health administrators, community organization, industry, the public) can participate meaningfully in the research project.
- Patients and parents were active participants in setting the research agenda for CHILD-BRIGHT. Together with other key stakeholders, they were involved in face-to-face meetings to prioritize research themes, which were subsequently validated by on online survey of over 900 youth and parents across Canada. For our application for funding of this network, 3 parents were Principal Investigators and there were dozens of patients and parents who were co-applicants on our submission for funding.