Michael J. Schull

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Organizations that gather information should establish a framework for responsibly managing user data. (Shutterstock)

Want to know if your data are managed responsibly? Here are 15 questions to help you find out

P. Alison Paprica, University of Toronto; Amy Hawn Nelson, University of Pennsylvania; Donna Curtis Maillet, University of New Brunswick; Kimberlyn McGrail, University of British Columbia, and Michael J. Schull, University of Toronto

Responsible data stewardship must take many factors into account including legal requirements, data governance, cybersecurity and user privacy.
In hackathons, people come together to build more extensive and cohesive datasets. (Shutterstock)

Hackathons should be renamed to avoid negative connotations

P. Alison Paprica, University of Toronto; Kimberlyn McGrail, University of British Columbia, and Michael J. Schull, University of Toronto

“Hackathons” can imply breaching security and privacy. To more accurately reflect their creative and constructive intent, they can be referred to instead as “datathons” or “code fests.”
Managing large datasets of sensitive health information requires accountability. (Shutterstock)

Health data collected during the coronavirus pandemic needs to be managed responsibly

P. Alison Paprica, University of Toronto; Adrian Thorogood, McGill University; Alex Ryan, University of Toronto; Kimberlyn McGrail, University of British Columbia, and Michael J. Schull, University of Toronto

Data trusts are a key part of a health data infrastructure that manages user and patient information in a responsible, transparent and accountable manner.
User agreements are often long, complex and inaccessible texts that don’t help users understand what exactly is being done with their information. Shutterstock

Plain language about health data is essential for transparency and trust

P. Alison Paprica, University of Toronto; Kimberlyn McGrail, University of British Columbia, and Michael J. Schull, University of Toronto

As more data are collected, it’s important for the public to understand how their health information is being used. But user agreements are often complex, lengthy and written in inaccessible language.