Patient and family engagement in research

“With the support and insights garnered from increased engagement with children and families, all children will be given the opportunity to contribute to and the right to benefit from research.”

– Francine Buchanan, Patient and Family Engagement Project Manager

From advising on what research questions are important to consulting on how to share research findings, SickKids is building a universal and equitable approach to research that is informed by our patient and family partners. Each of these initiatives is guided by our philosophy of child and family-centred care, that helps to ensure our patients and their families, are respected partners in all we do.  

Patient and family partnership in research is already a core value at SickKids, supported by the Patient Engagement in Research (PEiR) program, and the Research Family Advisory Committee (RFAC). Made up of patients, family members, researchers, and clinicians who volunteer their time to enhance patient-oriented research, the PEiR program offers researchers access to an active group of partners, with valuable insights that help ensure their research is patient and family oriented. These partnerships have resulted in more than 27 grant submissions and earned more than $10M in Canadian Institutes of Health Research funding since April 2021.   

The PEiR program is building patient engagement capacity by delivering training, tools and consultations to staff across the Research Institute, Learning Institute and clinical departments.  With 25 new research advisors helping to support research teams as trusted advisors, consultants and partners, the program is continuing to grow.    

In the future, a new Pathway to Connect for Research will support a centralized approach to identifying eligible research participants and contacting them about research engagement and help to ensure that every child has the opportunity to access and be involved in research.