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J Am Med Inform Assoc. 2018 Dec 20. doi: 10.1093/jamia/ocy159. [Epub ahead of print]

People-powered data collaboratives: fueling data science with the health-related experiences of individuals.

Author information

1
Law Center and Department of Electrical and Computer Engineering, University of Houston, Houston, Texas, USA.
2
Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, USA.
3
Department of Health Policy and Management, Yale School of Public Health, New Haven, Connecticut, USA.
4
Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, Connecticut, 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.

PMID:
30576557
DOI:
10.1093/jamia/ocy159

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