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Swapping data: A pragmatic approach for enabling academic-industrial partnerships

OBJECTIVES: Academic institutions have access to comprehensive sets of real-world data. However, their potential for secondary use—for example, in medical outcomes research or health care quality management—is often limited due to data privacy concerns. External partners could help achieve this pote...

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Autores principales: Kasprzak, Julia, Frey, Simon, Oetlinger, Hermann, Benedikt Westphalen, C., Erickson, Nicole, Heinemann, Volker, Nasseh, Daniel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10176540/
https://www.ncbi.nlm.nih.gov/pubmed/37188076
http://dx.doi.org/10.1177/20552076231172120
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author Kasprzak, Julia
Frey, Simon
Oetlinger, Hermann
Benedikt Westphalen, C.
Erickson, Nicole
Heinemann, Volker
Nasseh, Daniel
author_facet Kasprzak, Julia
Frey, Simon
Oetlinger, Hermann
Benedikt Westphalen, C.
Erickson, Nicole
Heinemann, Volker
Nasseh, Daniel
author_sort Kasprzak, Julia
collection PubMed
description OBJECTIVES: Academic institutions have access to comprehensive sets of real-world data. However, their potential for secondary use—for example, in medical outcomes research or health care quality management—is often limited due to data privacy concerns. External partners could help achieve this potential, yet documented frameworks for such cooperation are lacking. Therefore, this work presents a pragmatic approach for enabling academic-industrial data partnerships in a health care environment. METHODS: We employ a value-swapping strategy to facilitate data sharing. Using tumor documentation and molecular pathology data, we define a data-altering process as well as rules for an organizational pipeline that includes the technical anonymization process. RESULTS: The resulting dataset was fully anonymized while still retaining the critical properties of the original data to allow for external development and the training of analytical algorithms. CONCLUSION: Value swapping is a pragmatic, yet powerful method to balance data privacy and requirements for algorithm development; therefore, it is well suited to enable academic-industrial data partnerships.
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spelling pubmed-101765402023-05-13 Swapping data: A pragmatic approach for enabling academic-industrial partnerships Kasprzak, Julia Frey, Simon Oetlinger, Hermann Benedikt Westphalen, C. Erickson, Nicole Heinemann, Volker Nasseh, Daniel Digit Health Original Research OBJECTIVES: Academic institutions have access to comprehensive sets of real-world data. However, their potential for secondary use—for example, in medical outcomes research or health care quality management—is often limited due to data privacy concerns. External partners could help achieve this potential, yet documented frameworks for such cooperation are lacking. Therefore, this work presents a pragmatic approach for enabling academic-industrial data partnerships in a health care environment. METHODS: We employ a value-swapping strategy to facilitate data sharing. Using tumor documentation and molecular pathology data, we define a data-altering process as well as rules for an organizational pipeline that includes the technical anonymization process. RESULTS: The resulting dataset was fully anonymized while still retaining the critical properties of the original data to allow for external development and the training of analytical algorithms. CONCLUSION: Value swapping is a pragmatic, yet powerful method to balance data privacy and requirements for algorithm development; therefore, it is well suited to enable academic-industrial data partnerships. SAGE Publications 2023-05-08 /pmc/articles/PMC10176540/ /pubmed/37188076 http://dx.doi.org/10.1177/20552076231172120 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Research
Kasprzak, Julia
Frey, Simon
Oetlinger, Hermann
Benedikt Westphalen, C.
Erickson, Nicole
Heinemann, Volker
Nasseh, Daniel
Swapping data: A pragmatic approach for enabling academic-industrial partnerships
title Swapping data: A pragmatic approach for enabling academic-industrial partnerships
title_full Swapping data: A pragmatic approach for enabling academic-industrial partnerships
title_fullStr Swapping data: A pragmatic approach for enabling academic-industrial partnerships
title_full_unstemmed Swapping data: A pragmatic approach for enabling academic-industrial partnerships
title_short Swapping data: A pragmatic approach for enabling academic-industrial partnerships
title_sort swapping data: a pragmatic approach for enabling academic-industrial partnerships
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10176540/
https://www.ncbi.nlm.nih.gov/pubmed/37188076
http://dx.doi.org/10.1177/20552076231172120
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