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People-powered data collaboratives: fueling data science with the health-related experiences of individuals
Barbara J Evans1, Harlan M Krumholz2,3,4
1Law Center and Department of Electrical and Computer Engineering, University of Houston, Houston, Texas, USA.
Abstract:
The creation of people-driven data collaboratives, with governance structures that enable participants to have a meaningful voice in issues surrounding the use of their own data, is a novel strategy to harness our growing capacity to develop and maintain immense data assets from the real health experiences of individuals.
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