We Go Farther Together

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-NET, POND, 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-NET, POND, 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-NET, POND, 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. 


The Potential of Data Sharing: What Data Means for your Brain Health

“As the world has grappled with a global pandemic, we have faced much uncertainty and many challenges in our society and our economy. In dealing with these issues, however, we have also been presented with an opportunity – the chance to rethink outdated conventions and renew the way we do business as we rebuild our society,” Dr. Mona Nemer, Chief Science Advisor of Canada, spoke on how COVID-19 may serve as a catalyst for change in how we approach research.

It’s no surprise that in the aftermath of the pandemic, the calls for collaboration and open science have grown louder across the science and research community. Brain-CODE, OBI’s neuroinformatics platform is a strong example of how we can share data on a global scale, leading to improved care, while also protecting privacy and upholding consent. Continue reading “The Potential of Data Sharing: What Data Means for your Brain Health”

Big Data: What Does it Mean for Your Health?

Big data means many things to different people, but most agree that more data means better information leading to better decision making. Take Netflix as an example. It gathers tons of data from our watching habits and uses it to provide personalized recommendations and develop new content to improve the user experience. Healthcare is not Netflix, but can we borrow their approach to ensure that data is used more effectively to improve people’s experience? To start, we need to rethink how we collect and use research data. This is why the Ontario Brain Institute and our partners have developed our data platform called Brain-CODE.

Continue reading “Big Data: What Does it Mean for Your Health?”

Brain-CODE – An Engine for Collaboration

The Ontario Brain Institute (OBI)  builds collaborations between Ontario neuroscientists so that they can combine their diverse expertise and resources to better understand brain disorders and translate these discoveries into new tools and treatments. Continue reading “Brain-CODE – An Engine for Collaboration”

Brain-CODE Offers First Open Data Access

Ontario has one of the highest concentrations of brain researchers anywhere in the world. But researchers in this community largely worked in isolation and tended not to share ideas or data. The Ontario Brain Institute’s (OBI’s) Integrated Discovery Programs changed this and brought large groups of researchers together to better understand and treat brain disorders. This collaborative approach led to the idea of standardizing data and housing it in a shared space where it is curated, analyzed and shared. This ensures that the data are collected in the same manner, making it easier to share and accelerate discovery. Continue reading “Brain-CODE Offers First Open Data Access”

Setting the Stage for Deep-Data Analysis and Innovation

“With great power comes great responsibility” – Ben Parker.

Ontario Brain Institute’s (OBI) researchers collect ‘deep data’ using scientific and clinical tools like behavioural tests, neuroimaging and genetics. By bringing these data together in Brain-CODE, we can develop a holistic approach to understanding brain disorders. A recent report, “Dementia Research and Care: Can Big Data Help?”, by the Organization for Economic Co-operation and Development (OECD), Ontario Brain Institute and the University of Toronto highlighted the potential of linking ‘deep data’ from basic and clinical research to ‘broad data’ from healthcare and population-level statistics to driving new discoveries and applications of research in healthcare and policy.

The question is how can we best link ‘deep’ research data and ‘broad’ health data to drive new discoveries and benefit people in their communities?

Continue reading “Setting the Stage for Deep-Data Analysis and Innovation”

Inventiveness Accelerates Drug Discovery Process- A smart shortcut to developing new drug treatments for Parkinson’s disease

It takes almost a decade and billions of dollars to develop a drug for brain disorders. Furthermore, 88% of those drugs fail clinical trials because of their lack of efficacy and safety1.  The entire process is not only daunting but very costly, in terms of time and money.

But, what if there was a way to accelerate the process? Continue reading “Inventiveness Accelerates Drug Discovery Process- A smart shortcut to developing new drug treatments for Parkinson’s disease”