Big Data Needs Big Governance: Best Practices From Brain-CODE, the Ontario-Brain Institute's Neuroinformatics...

Area of Science:

• Neuroscience
• Data Science
• Health Informatics

Background:

• The Ontario Brain Institute (OBI) developed Brain-CODE, a large-scale informatics platform.
• Brain-CODE facilitates data capture, storage, federation, sharing, and analysis for brain disorder research.
• A robust data governance structure underpins the platform, balancing scientific advancement with participant privacy.

Purpose of the Study:

• To highlight best practices in large-scale data sharing for neuroscience research.
• To present a key open resource for developing similar open science initiatives.
• To showcase OBI's approach to enabling scientific discovery through data sharing.

Main Methods:

• Implementation of a scalable informatics platform (Brain-CODE).
• Development of a flexible and robust data governance structure.
• Adoption of a Privacy by Design approach for data sharing and platform development.

Main Results:

• Established best practices for large-scale data sharing within Canada.
• Designed a governance structure supporting collaborative and open science.
• Ensured data accessibility for discoveries while maintaining privacy and security.

Conclusions:

• OBI's Brain-CODE platform demonstrates a successful model for catalyzing neuroscience discovery.
• A Privacy by Design approach is crucial for secure and effective large-scale data sharing.
• The developed best practices can guide future open science initiatives in data-intensive research.