Our work in patient engagement is guided by our Research Patient and Family Advisory Committee (PFAC). PFAC is made up of CHEO family members who believe in the impact research can have on how we care for kids at CHEO and beyond as well as six administrators/researchers from the CHEO Research Institute (CHEO-RI). The committee works to engage families in all aspects of research conducted by CHEO-RI.
Based on experienced family voices, the PFAC advises and makes recommendations to CHEO-RI staff in order to promote family engagement in research. We’re moving beyond families as only research participants to families as partners in all aspects of the research process from developing an idea or research question to sharing the study results.
Responsibilities and Opportunities
- Attend monthly meetings at the CHEO-RI (in person, teleconference or video conference).
- Advance client and family-centered research.
- Help researchers identify and plan future directions.
- Provide advice on the communication strategy:
- Help researchers plan how to best share the results
- Help researchers ensure that results are understandable to families who were part of the research
- Co-present or co-publish findings
- Help with social media communication (e.g. Discovery Minutes)
- Advise the CHEO-RI on how to promote family engagement in research
- Share knowledge with caregivers and other parents
Patient and Family Advisory Committee Members 2022-2023
Research Family Leader Program Coordinator
Administrative Support, CHEO Research Insititute
Chief Operating Officer, CHEO Research Institute
Senior Scientist, CHEO Research Institute
Investigator, CHEO Research Institute
Manager, Genetic Skeletal Disorders Research Program
Patient/Family Representative (Youth Advisor)