"Opportunities for researchers and families to share their ideas and perspectives with one another are valuable. These opportunities enhance understanding and knowledge on both sides, can promote greater family engagement in research, and, in essence, help researchers and families work together to identify, guide and shape research which is significant and meaningful."
– Anna Pallotta, Research Family Engagement Committee (RFEC) co-chair
"By working collaboratively with scientists, the family voice impacts research to ensure that the results are meaningful for the end user or ‘stakeholder’."
– Jan Magee, vice-chair of the RFEC
"Families can provide essential input during all phases of research resulting in more appropriate and needs based focuses. As an RFEC member, I am more involved, informed, and can influence and drive current and future research to address what matters most to families.”
– Suzanne Jorisch, RFEC member
"A lot of times families with children of special needs feel so helpless, but by being recognized as a specialist to your own children and given the opportunity to be a part of the research team that listens to what research is important to families and how it can affect the quality of life for their children, this gives a great sense of purpose and satisfaction that cannot be explained."
– Sharda Ali-Ramjattan, RFEC member
"The family voice can help bridge the gap between pure/applied science and addressing day-to-day needs to improve quality of life for clients and families."
– Kyoko Davis, RFEC member
"One area where we have particular success and interest is from graduate students attached to the Institute, who are at a point where they have to develop their own research projects. They are eager for input and particularly interested in hearing from patients and families, because they are keen to be doing work seen to be relevant and applicable to the community. This is an excellent area for a nascent program to start - and an opportunity, of course, to establish new behaviours with the next generation of researchers."
– Gideon Sheps, RFEC member