The politics of constructing health data spaces: Border work and the stickiness of fragmentation

This article explores the construction of health data spaces through the lens of border work. It provides insights into the complex attachments and detachments that come to the fore when establishing centralized health data access bodies in the Nordic countries. By comparing Denmark, Norway, and Fin...

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Main Authors: Heidrun Åm, Lotte Groth Jensen, Rasmus Mølgaard Hansen, Karoliina Snell, Heta Tarkkala, Aaro Tupasela
Format: Article
Language:English
Published: SAGE Publishing 2025-03-01
Series:Big Data & Society
Online Access:https://doi.org/10.1177/20539517251320012
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author Heidrun Åm
Lotte Groth Jensen
Rasmus Mølgaard Hansen
Karoliina Snell
Heta Tarkkala
Aaro Tupasela
author_facet Heidrun Åm
Lotte Groth Jensen
Rasmus Mølgaard Hansen
Karoliina Snell
Heta Tarkkala
Aaro Tupasela
author_sort Heidrun Åm
collection DOAJ
description This article explores the construction of health data spaces through the lens of border work. It provides insights into the complex attachments and detachments that come to the fore when establishing centralized health data access bodies in the Nordic countries. By comparing Denmark, Norway, and Finland, the study unveils a variety of border work practices. These practices include the complex interplay between national infrastructures, local practices, and regulatory frameworks, the management of continuous attachments through additional loops, and negotiations over public-private borders. The study shows that, despite policy goals envisioning health data access bodies as seamless one-stop shops for ‘detached’ data, the data remains attached to places, institutions, people, and countries. Consequently, new data spaces tend to emerge and co-exist with existing ones. Our analysis of the Nordic experiences offers valuable lessons and critical insights for ongoing efforts to build a European Health Data Space. We further suggest that this stickiness of fragmentation might be a common feature of big data policy efforts.
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issn 2053-9517
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series Big Data & Society
spelling doaj-art-9a4d0fd264c948909c3062a7172ae1fe2025-08-20T02:56:39ZengSAGE PublishingBig Data & Society2053-95172025-03-011210.1177/20539517251320012The politics of constructing health data spaces: Border work and the stickiness of fragmentationHeidrun Åm0Lotte Groth Jensen1Rasmus Mølgaard Hansen2Karoliina Snell3Heta Tarkkala4Aaro Tupasela5 , Trondheim, Norway , Aarhus, Denmark , Aarhus, Denmark , Helsinki, Finland , Helsinki, Finland , Helsinki, FinlandThis article explores the construction of health data spaces through the lens of border work. It provides insights into the complex attachments and detachments that come to the fore when establishing centralized health data access bodies in the Nordic countries. By comparing Denmark, Norway, and Finland, the study unveils a variety of border work practices. These practices include the complex interplay between national infrastructures, local practices, and regulatory frameworks, the management of continuous attachments through additional loops, and negotiations over public-private borders. The study shows that, despite policy goals envisioning health data access bodies as seamless one-stop shops for ‘detached’ data, the data remains attached to places, institutions, people, and countries. Consequently, new data spaces tend to emerge and co-exist with existing ones. Our analysis of the Nordic experiences offers valuable lessons and critical insights for ongoing efforts to build a European Health Data Space. We further suggest that this stickiness of fragmentation might be a common feature of big data policy efforts.https://doi.org/10.1177/20539517251320012
spellingShingle Heidrun Åm
Lotte Groth Jensen
Rasmus Mølgaard Hansen
Karoliina Snell
Heta Tarkkala
Aaro Tupasela
The politics of constructing health data spaces: Border work and the stickiness of fragmentation
Big Data & Society
title The politics of constructing health data spaces: Border work and the stickiness of fragmentation
title_full The politics of constructing health data spaces: Border work and the stickiness of fragmentation
title_fullStr The politics of constructing health data spaces: Border work and the stickiness of fragmentation
title_full_unstemmed The politics of constructing health data spaces: Border work and the stickiness of fragmentation
title_short The politics of constructing health data spaces: Border work and the stickiness of fragmentation
title_sort politics of constructing health data spaces border work and the stickiness of fragmentation
url https://doi.org/10.1177/20539517251320012
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