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Ten principles for data sharing and commercialization

Digital medical records have enabled us to employ clinical data in many new and innovative ways. However, these advances have brought with them a complex set of demands for healthcare institutions regarding data sharing with topics such as data ownership, the loss of privacy, and the protection of t...

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Autores principales: Cole, Curtis L, Sengupta, Soumitra, Rossetti (née Collins), Sarah, Vawdrey, David K, Halaas, Michael, Maddox, Thomas M, Gordon, Geoff, Dave, Trushna, Payne, Philip R O, Williams, Andrew E, Estrin, Deborah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7936510/
https://www.ncbi.nlm.nih.gov/pubmed/33186458
http://dx.doi.org/10.1093/jamia/ocaa260
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author Cole, Curtis L
Sengupta, Soumitra
Rossetti (née Collins), Sarah
Vawdrey, David K
Halaas, Michael
Maddox, Thomas M
Gordon, Geoff
Dave, Trushna
Payne, Philip R O
Williams, Andrew E
Estrin, Deborah
author_facet Cole, Curtis L
Sengupta, Soumitra
Rossetti (née Collins), Sarah
Vawdrey, David K
Halaas, Michael
Maddox, Thomas M
Gordon, Geoff
Dave, Trushna
Payne, Philip R O
Williams, Andrew E
Estrin, Deborah
author_sort Cole, Curtis L
collection PubMed
description Digital medical records have enabled us to employ clinical data in many new and innovative ways. However, these advances have brought with them a complex set of demands for healthcare institutions regarding data sharing with topics such as data ownership, the loss of privacy, and the protection of the intellectual property. The lack of clear guidance from government entities often creates conflicting messages about data policy, leaving institutions to develop guidelines themselves. Through discussions with multiple stakeholders at various institutions, we have generated a set of guidelines with 10 key principles to guide the responsible and appropriate use and sharing of clinical data for the purposes of care and discovery. Industry, universities, and healthcare institutions can build upon these guidelines toward creating a responsible, ethical, and practical response to data sharing.
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spelling pubmed-79365102021-03-10 Ten principles for data sharing and commercialization Cole, Curtis L Sengupta, Soumitra Rossetti (née Collins), Sarah Vawdrey, David K Halaas, Michael Maddox, Thomas M Gordon, Geoff Dave, Trushna Payne, Philip R O Williams, Andrew E Estrin, Deborah J Am Med Inform Assoc Perspective Digital medical records have enabled us to employ clinical data in many new and innovative ways. However, these advances have brought with them a complex set of demands for healthcare institutions regarding data sharing with topics such as data ownership, the loss of privacy, and the protection of the intellectual property. The lack of clear guidance from government entities often creates conflicting messages about data policy, leaving institutions to develop guidelines themselves. Through discussions with multiple stakeholders at various institutions, we have generated a set of guidelines with 10 key principles to guide the responsible and appropriate use and sharing of clinical data for the purposes of care and discovery. Industry, universities, and healthcare institutions can build upon these guidelines toward creating a responsible, ethical, and practical response to data sharing. Oxford University Press 2020-11-13 /pmc/articles/PMC7936510/ /pubmed/33186458 http://dx.doi.org/10.1093/jamia/ocaa260 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of the American Medical Informatics Association. http://creativecommons.org/licenses/by-nc/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Perspective
Cole, Curtis L
Sengupta, Soumitra
Rossetti (née Collins), Sarah
Vawdrey, David K
Halaas, Michael
Maddox, Thomas M
Gordon, Geoff
Dave, Trushna
Payne, Philip R O
Williams, Andrew E
Estrin, Deborah
Ten principles for data sharing and commercialization
title Ten principles for data sharing and commercialization
title_full Ten principles for data sharing and commercialization
title_fullStr Ten principles for data sharing and commercialization
title_full_unstemmed Ten principles for data sharing and commercialization
title_short Ten principles for data sharing and commercialization
title_sort ten principles for data sharing and commercialization
topic Perspective
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7936510/
https://www.ncbi.nlm.nih.gov/pubmed/33186458
http://dx.doi.org/10.1093/jamia/ocaa260
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