Medina-Perea, I. orcid.org/0000-0003-1702-1484, Bates, J. orcid.org/0000-0001-7266-8470 and Cox, A. orcid.org/0000-0002-2587-245X (2024) ‘Data saves lives’: ideational-material drivers of health data journeys in the UK. Big Data & Society, 11 (4). ISSN 2053-9517
Abstract
In this paper, we bring together the concepts of data valences and data journeys to examine how ideational and material factors work together to shape the movement of health data from the UK healthcare sector to universities for reuse in research. Specifically, we focus on the interaction of university-based researchers’ constructs about data with the material conditions of health data circulation in the UK and how these dynamics drive greater circulation of health data through the data sharing infrastructure. Building on our empirical research, we identify four data valences or expectations about data present in the discourses of university-based researchers – vanguard, discovery, truthiness and actionability – and three material factors – investment in data, infrastructure and labour. We argue that the interaction of these factors has created a favourable environment for making data flow from the healthcare sector into the hands of university-based researchers. This work contributes to a better understanding of why health data reuse practices are expanding and being sustained, and it challenges previous health data reuse research that treats the drivers shaping data flows as self-evident or already determined.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2024. 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). |
Keywords: | Data flows; data circulation; data journeys; data valences; health data; healthcare |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Social Sciences (Sheffield) > Information School (Sheffield) |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 11 Nov 2024 15:57 |
Last Modified: | 11 Nov 2024 15:58 |
Status: | Published |
Publisher: | SAGE Publications |
Refereed: | Yes |
Identification Number: | 10.1177/20539517241296056 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:219489 |