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

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 expe...

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Detalles Bibliográficos
Autores principales: Evans, Barbara J, Krumholz, Harlan M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2018
Materias:
Perspective
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6339513/
https://www.ncbi.nlm.nih.gov/pubmed/30576557
http://dx.doi.org/10.1093/jamia/ocy159
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author Evans, Barbara J
Krumholz, Harlan M
author_facet Evans, Barbara J
Krumholz, Harlan M
author_sort Evans, Barbara J
collection PubMed
description 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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spelling pubmed-63395132019-01-24 People-powered data collaboratives: fueling data science with the health-related experiences of individuals Evans, Barbara J Krumholz, Harlan M J Am Med Inform Assoc Perspective 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. Oxford University Press 2018-12-20 /pmc/articles/PMC6339513/ /pubmed/30576557 http://dx.doi.org/10.1093/jamia/ocy159 Text en © The Author(s) 2018. Published by Oxford University Press on behalf of the American Medical Informatics Association http://creativecommons.org/licenses/by-nc-nd/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial reproduction and distribution of the work, in any medium, provided the original work is not altered or transformed in any way, and that the work is properly cited. For commercial re-use, please contactjournals.permissions@oup.com
spellingShingle Perspective
Evans, Barbara J
Krumholz, Harlan M
People-powered data collaboratives: fueling data science with the health-related experiences of individuals
title People-powered data collaboratives: fueling data science with the health-related experiences of individuals
title_full People-powered data collaboratives: fueling data science with the health-related experiences of individuals
title_fullStr People-powered data collaboratives: fueling data science with the health-related experiences of individuals
title_full_unstemmed People-powered data collaboratives: fueling data science with the health-related experiences of individuals
title_short People-powered data collaboratives: fueling data science with the health-related experiences of individuals
title_sort people-powered data collaboratives: fueling data science with the health-related experiences of individuals
topic Perspective
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6339513/
https://www.ncbi.nlm.nih.gov/pubmed/30576557
http://dx.doi.org/10.1093/jamia/ocy159
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