Unlocking the Power of Data Sharing Through Global Collaboration.
Healthcare data pooled from entire populations can provide new ways of assessing the effectiveness of a new treatment or a system of care. Given the international push for open science, the entire medical community can use “big data” to identify trends and derive knowledge from around the world.
Data about the brain is only as good as the programs and processes that enable it to be put into practice. Given that such data is often collected from disparate sources, uniting them into a bigger, global picture can be challenging.
Enter the ‘Redefining neurodegeneration: a global collaboration to share deep phenotyping data’ conference organized by OBI in partnership with Nature Neuroscience and the Centre for Addiction and Mental Health. Held in Toronto in late 2018, it brought together 75 neuroscientists and neuroinformatics experts and 26 national and international organizations. Participants discussed data standardization approaches to enable sharing and analyses, producing learnings to better drive discovery and accelerate the development of effective treatments for neurodegenerative disorders.
“Science is a global enterprise and having institutional expertise within each geography is essential to build bridges and enable execution of international road-mapped efforts. OBI has been a thought-leader and seminal force in identifying the underlying issues that affect utilization of data and have spearheaded initiatives that provide focused solutions, while representing Ontario & Canada regionally and internationally.”
Data sharing continues to be one of OBI’s major areas of focus. Our central neuroinformatics platform, Brain-CODE (the “shared brain”), helps more than 240 researchers at over 40 institutions across Canada share their data. It allows scientists, clinicians and industry to work together in powerful new ways, enabling breakthroughs in brain-related health to happen more quickly.
In the age of "big data”, international efforts are needed to link, share and analyze data on a global scale. A major outcome of this conference was to see conversations move beyond the known challenges of international data sharing to discussions on how to operationalize data sharing internationally. It is a small but significant step towards establishing data linkages that will empower researchers with the ‘big data’ they need to better understand complexity of neurodegenerative disease.
