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How to build a data culture with purpose
The Data Chief
The Challenge of Sharing Data and Reusing Data
FAIR principles, FAIR data principles, findable, accessible, interoperable, reusable data principles published in 2016. But they're all about finding you have to be able to find the data first and then access it. And I think that there's an ethical piece of that rewriting the rules. Patients and families need complete autonomy to decide when and how their data is going to be used.
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