Kimberlyn McGrail

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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.
It is clear that some public trust in public health, science and government has been lost in Canada and around the world. (Shutterstock)

Inquiry must assess how Canada’s fragmented COVID‑19 response lost the public’s trust

Tania Bubela, Simon Fraser University; Kimberlyn McGrail, University of British Columbia, and Sharmistha Mishra, University of Toronto

Now is the time to learn from the COVID-19 response through an action-oriented independent inquiry focused on accountability. Reforms to data generation, access and use are essential.
Support for use of health data is conditional on whether the use has public benefits. (Brittany Datchko/Graphic Journeys)

How can health data be used for public benefit? 3 uses that people agree on

P. Alison Paprica, University of Toronto; Annabelle Cumyn, Université de Sherbrooke ; Julia Burt, Memorial University of Newfoundland; Kimberlyn McGrail, University of British Columbia, and Roxanne Dault, Université de Sherbrooke

There are concerns about how health data are used, but research shows support for uses with public benefits by health-care providers, governments, health-system planners and university-based researchers.
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.
Data collected by governments is a treasure trove of useful information for researchers. Shutterstock

Data collected by governments can be useful to researchers, but only when accessed carefully

Jack Teng, University of British Columbia; Kieran C O'Doherty, University of Guelph; Kimberlyn McGrail, University of British Columbia, and Michael Burgess, University of British Columbia

A recent public deliberation in British Columbia identified that access to government data should be managed carefully and efficiently.

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