It started with a powerful suggestion in a comment box:  

“Let’s work together on something that cuts across our research programs”  

This simple message on a folded piece of paper planted a seed in all of our minds about how and what we can do to work together on a shared initiative.  

Andrew Kcomt, co-chair of CAN-BIND’s Community Advisory Committee, believes that “Rooted in our shared goals, planting seeds of knowledge allows us to grow towards improving care and quality of life for those living with brain disorders.” Following Andrew’s lead, our Knowledge Translation and Communications specialists across OBI’s six funded research programs began identifying themes for a cross cutting project.  The number one topic that everyone agreed on was data sharing.  We felt strongly that it was time for the Ontario Brain Institute (OBI) and its research programs to recognize the participants of our research studies, acknowledge their contributions to science and discovery and share how we are ensuring their data remains private, protected, and secured. That’s how the theme ‘Discovery Starts With You’ was born.   

Once we had identified a theme, we started sharing this idea among our patient and community advisory committee (PAC) members. We held discussions about why they were interested in research, what it meant for them to contribute their data, and what motivated them to participate in research studies.  We also identified the different audiences we wanted to reach with our ‘Discovery Starts With You’ series.  Our community members guided us in tailoring the message and ensuring we had a diversity of representation in the products we produce within the series.  They are valued partners in these products, and from our experience the contributions of our community members make the content so much more relevant and meaningful.  

Now we have a series of products coming out over the next few months that have been inspired by and dedicated to the community of people with lived experience. The first in the series is a webinar recording recapping the recent findings of a study on sleep, mental health, and quality of life in children with neurodevelopmental disorders. The study involved three of our research programs, CP-NETPOND, and EpLink, and is a concrete example of how data can be collected from different groups and for different reasons, but then shared and used to further our understanding about the brain.  What is so cool about this study is that no new research participants had to be recruited. It was conducted using common data elements from previous studies that exist in our data sharing platform called Brain-CODE. PAC members from CP-NETPOND, and EpLink participated in a consultation about the study findings and how to present them in a webinar format for parents.  This advice was used to help shape the webinar and the members involved were acknowledged in the manuscript of the study.  

The next product to be released in the series is a podcast featuring three women who talk about why different people participate in research, from their unique perspectives: the care partner, the researcher and the research student.  This podcast is a partnership between ONDRI and CAN-BIND and the inception of this idea came from a discussion over coffee between Shelley, a retired mental health lawyer, who has had the unique opportunity to sit on two PACs, and Ruth Kruger, ONDRI’s Strategist for Communications and Stakeholder Relations.   In the podcast Shelley shares why she is a fan of data sharing,  

“I find this really interesting and exciting from the perspective of a person with lived experience. I’m participating in a study about aging and neurodegeneration while at the same time I’m contributing to the possibility of making breakthroughs that lead to a better understanding not only of aging and neurodegeneration, but also depression and autism and epilepsy and cerebral palsy and concussions and so on. So, the potential of my participation in one OBI-funded research study is amplified because of OBI’s approach.” 

In Shelley’s role as a community representative, she has been very involved in many OBI activities since she joined in 2014 and has a good understanding of our team science approach to sharing data across disorders and disciplines.  Not everyone has this understanding of how we share data, and the steps OBI and our research programs take to make sure the data is private, protected, and secured.  With this in mind, together with EpLink and CAN-BIND, we created a short, two-minute video about what happens to your data when you participate in an OBI-funded research study.  For this video we went back to our PACs to review the script and storyboard and make sure we captured the right elements in a digestible and concise way. It was also important for us to get the right narrator for the video. Nathan Tasker is a patient-partner of CP-NET, and a past research participant of MyStory; he brings his own personal experience and does a beautiful job communicating the importance of data sharing.   

This ‘Discovery Starts With You’ series will culminate with the release of two podcasts put together by youth representatives from CP-NETPOND, and EpLink about participating and partnering in research studies.  These podcasts will be moderated by Amanda St. Dennis, a member of CP-NET’s stakeholder advisory committee.  The panels will feature young adults with diverse experiences all motivated by a common goal and leaving behind a legacy.  The two podcasts and video will be released early this year, so stay tuned! 

Thank you to everyone involved in this cross-OBI project! We all went above and beyond to make this happen, and it has fostered new relationships and made existing ones stronger. Together, we invite you to view this series and share our sincere thanks and gratitude to those who have given so much time participating in research. To paraphrase Andrew, working towards our program-wide vision of improved health and wellness for those living with brain disorders, we are delighted to share what we have learned from you and with you. 



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