In the last decade, advances in childhood disability research have led to new opportunities for children and youth with disabilities and their families. Likewise, many Ontario hospitals have recently adopted patient-centred care models to integrate the family voice in meaningful ways. The leadership of this practice at Holland Bloorview has led to an integrated family engagement program to merge the patient perspective across the hospital and the research institute, and inform best practices. A key element in the success of all research conducted in the Bloorview Research Institute is family engagement.
Informing the research agenda for a healthier, wealthier, smarter future
Patients and families are integrated in all aspects of the research process from idea conception to knowledge translation. A framework was developed to involve clients and families on research teams as co-researchers, in the review of proposals prior to submission for funding, in the development of communication guidelines and as co-presenters at conferences and symposiums. Families also inform the research agenda through participation on the Research Family Engagement Committee (RFEC), which is part of Holland Bloorview’s Family Leadership Program.
