Brain-Child-Partners Conference: reflections on our theme of reciprocity

November 17, 2017
 
Brain-Child-Partners, our first annual conference held in partnership with the CHILD-BRIGHT Network, took place on November 6-8 in Toronto.

The three-day event, bracketed by single days dedicated to each network, also featured one day of joint sessions. From planning to presenting to commentary and evaluation, every aspect of the conference placed unprecedented focus on engaging families. 
 

“Brain-Child-Partners was amazingly successful from many perspectives,” reflects Dr. Dan Goldowitz, Kids Brain Health Network Scientific Director. “We should be proud of what transpired, and look to replicate this approach going forward.”
 
Family Engagement     
 
Donna Thomson, a Kids Brain Health board member and true champion of family engagement within the Network, also sits on CHILD-BRIGHT’s steering and citizen engagement committees. As a member of the conference organizing committee, she proposed and supported patient and parent speakers such as Julie Drury, Rachel Martens, Laura Williams, Symon Hay, Kate Robson, Crystal Chin, Mathias Castaldo, and Louise Kinross.
 
While attending the conference, Donna chronicled the involvement of parents, youth and young adults. Highlights appear below. 
 
Reflections on Reciprocity at the Brain-Child-Partners Conference 
 
Day Two, the joint day of conference programming, began with a riveting presentation by parent and bioethicist Jennifer Johannesen, who challenged us all to question the ethics and the value of family engagement in research. 
 
In “Exploring the Purpose and Meaning of Patient Engagement in Pediatric Disability Research,” she posed fascinating and provocative remarks focusing on questions such as, “Why does patient engagement occur?” and “How we can do it better?” The full presentation is published on her website. http://johannesen.ca/2017/11/exploring-purpose-meaning-patient-engagement-pediatric-neurodisability-research/ 
 
Patient Engagement  
 
As important as the parent voice is, so is the voice of the patient. Patients are living with these disabilities and their voice, experience and insights are valuable to researchers. 
 
Symon Hay captured the issue well when he said, “I think quality of life should be the root as individuals, health care practitioners, care givers and researchers.” He also spoke about how lucky he was to have had a doctor who put more stock into who Symon was as a person, than just his diagnoses alone. This enabled him to live a full and active life. 

Reciprocity is Like the Tango

In her closing remarks Donna Thomson described the rewards of reciprocity, as a conference theme, and as a process. 
 
“Reciprocity is working together,” she said, “sharing what we have and what we know so that our whole is greater than the sum of our parts. 
 
“But working together is hard. It’s like a dance. Take the tango. In dancing the tango, the moves are complicated. It’s passionate. We often step on each other’s’ toes, especially when we’re learning. But the most important thing about the tango is that the lead changes back and forth between the partners. 
 
“So, what’s the upshot really of all this reciprocity and partnership? 
 
“We are learning to dance together, passionately. But what that really changes is the conversation that we have with ourselves and others. “We need money” transforms into “Look at what we have, join us. Invest, let’s profit together”. Or as Pranesh Chakroborty said in the last panel, “let’s stop being cagey, let’s talk.”
 
“So, that’s what we are going to take going forward, starting with our partnership day tomorrow. Of course we need money for research, but we are already RICH. Together, we have what other people need. 
 
Thank you all for sharing your riches over the last three days. Let’s continue sharing, exchanging and telling our stories of abundance.”
 
The Brain Child Partners Conference received a grade of an A++ from the families that attended, she concluded. “We are grateful for the support and thank everyone that participated in making our conference a success.”