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Exciting initiatives on the horizon

From the desk of Sharon Gabison, Research Family Engagement Committee (RFEC) Co-chair

I am excited to be joining the Research Family Engagement Committee (RFEC) this year as the new co-chair. I am hoping that my experience as a parent, who engages in research and clinical practice will bring a unique perspective to the RFEC.

The RFEC is excited to be participating in several initiatives this year including the development of a communication strategy that will promote the incredible research that is being undertaken. Clients and families value research that is being conducted at Holland Bloorview’s research institute, however, many do not have this information freely accessible to them. The RFEC is working collaboratively with scientists at the Bloorview Research Institute (BRI) in exploring how best to support the dissemination of research findings in an accessible format for families and clients.

The RFEC is also continuing to work with scientists at BRI to complete “Research 101”, an online module that will be available to families involved with, or interested in research. This is a joint effort with SickKids funded by a SPOR (Strategy Patient Oriented Research) Grant. Families continue to participate in many elements of the research process at BRI through advice and letters of support, reviewing grants, and assisting with publications. In 2016, approximately 185 volunteer hours were provided to researchers through the RFEC. Overall, over 600 hours were contributed to the BRI by family leaders in roles such as reviewing research, advising, and communication. We are excited to be sharing our initiatives through external organizations by presenting at conferences, Grand Rounds, Symposiums and to relevant stakeholders. We know that not only do families have an important voice, but researchers value family input.

As one researcher says: “Family leaders have been integral in enhancing my work. They bring a unique perspective, and help me deal more effectively and compassionately with families. Any work I do is greatly improved with input from family leaders.”

We continue to seek feedback from families and encourage all clinicians, researchers and staff to encourage families to complete a 3-minute Summer Family Engagement Survey. Click here 

To learn more about the family engagement program, click here.