COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic

In 2020, the COVID-19 pandemic resulted in a rapid response from governments and researchers worldwide, but information-sharing mechanisms were variable, and many early efforts were insufficient for the purpose. We interviewed fifteen data professionals located around the world, working with COVID-1...

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Main Authors: Yo Yehudi, Lukas Hughes-Noehrer, Carole Goble, Caroline Jay
Format: Article
Language:English
Published: Cambridge University Press 2025-01-01
Series:Data & Policy
Online Access:https://www.cambridge.org/core/product/identifier/S2632324924000798/type/journal_article
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author Yo Yehudi
Lukas Hughes-Noehrer
Carole Goble
Caroline Jay
author_facet Yo Yehudi
Lukas Hughes-Noehrer
Carole Goble
Caroline Jay
author_sort Yo Yehudi
collection DOAJ
description In 2020, the COVID-19 pandemic resulted in a rapid response from governments and researchers worldwide, but information-sharing mechanisms were variable, and many early efforts were insufficient for the purpose. We interviewed fifteen data professionals located around the world, working with COVID-19-relevant data types in semi-structured interviews. Interviews covered both challenges and positive experiences with data in multiple domains and formats, including medical records, social deprivation, hospital bed capacity, and mobility data. We analyze this qualitative corpus of experiences for content and themes and identify four sequential barriers a researcher may encounter. These are: (1) Knowing data exists, (2) being able to access that data, (3) data quality, and (4) ability to share data onwards. A fifth barrier, (5) human throughput capacity, is present throughout all four stages. Examples of these barriers range from challenges faced by single individuals to non-existent records of historic mingling/social distance laws, and up to systemic geopolitical data suppression. Finally, we recommend that governments and local authorities explicitly create machine-readable temporal “law as code” for changes in laws such as mobility/mingling laws and changes in geographical regions.
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spelling doaj-art-4e1c43cfdbe04e7fa14338c547c4f6912025-08-20T02:41:17ZengCambridge University PressData & Policy2632-32492025-01-01710.1017/dap.2024.79COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemicYo Yehudi0https://orcid.org/0000-0003-2705-1724Lukas Hughes-Noehrer1https://orcid.org/0000-0002-9167-0397Carole Goble2Caroline Jay3Department of Computer Science, University of Manchester, Oxford Road, Manchester M13 9PL, UK Open Life Science Limited, Wimblington, PE15 0QE, UK.Department of Computer Science, University of Manchester, Oxford Road, Manchester M13 9PL, UKDepartment of Computer Science, University of Manchester, Oxford Road, Manchester M13 9PL, UKDepartment of Computer Science, University of Manchester, Oxford Road, Manchester M13 9PL, UKIn 2020, the COVID-19 pandemic resulted in a rapid response from governments and researchers worldwide, but information-sharing mechanisms were variable, and many early efforts were insufficient for the purpose. We interviewed fifteen data professionals located around the world, working with COVID-19-relevant data types in semi-structured interviews. Interviews covered both challenges and positive experiences with data in multiple domains and formats, including medical records, social deprivation, hospital bed capacity, and mobility data. We analyze this qualitative corpus of experiences for content and themes and identify four sequential barriers a researcher may encounter. These are: (1) Knowing data exists, (2) being able to access that data, (3) data quality, and (4) ability to share data onwards. A fifth barrier, (5) human throughput capacity, is present throughout all four stages. Examples of these barriers range from challenges faced by single individuals to non-existent records of historic mingling/social distance laws, and up to systemic geopolitical data suppression. Finally, we recommend that governments and local authorities explicitly create machine-readable temporal “law as code” for changes in laws such as mobility/mingling laws and changes in geographical regions.https://www.cambridge.org/core/product/identifier/S2632324924000798/type/journal_article
spellingShingle Yo Yehudi
Lukas Hughes-Noehrer
Carole Goble
Caroline Jay
COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic
Data & Policy
title COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic
title_full COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic
title_fullStr COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic
title_full_unstemmed COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic
title_short COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic
title_sort covid 19 an exploration of consecutive systemic barriers to pathogen related data sharing during a pandemic
url https://www.cambridge.org/core/product/identifier/S2632324924000798/type/journal_article
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AT carolegoble covid19anexplorationofconsecutivesystemicbarrierstopathogenrelateddatasharingduringapandemic
AT carolinejay covid19anexplorationofconsecutivesystemicbarrierstopathogenrelateddatasharingduringapandemic