The politics of constructing health data spaces
Border work and the stickiness of fragmentation
Datos Bibliográficos
| ID | 5260879 |
|---|---|
| Autores | Heidrun Åm (0000-0001-5980-0158, Norwegian University of Science and Technology, autor de correspondencia), Lotte Groth Jensen (0000-0003-1447-965X, DEFACTUM, Aarhus, Denmark), Richard M Hansen (0009-0007-4883-0416, DEFACTUM, Aarhus, Denmark), Karoliina Snell (0000-0002-2643-6676, University of Helsinki), Heta Tarkkala (0000-0001-5284-3091, University of Helsinki), Aaro Tupasela (0000-0003-1512-7533, University of Helsinki) |
| Año | 2025 |
| Volumen | 12 |
| Número | 1 |
| Fecha de publicación | 2025-03-01 |
| Open Access | Sí |
| Tipo | ARTICLE |
| Revista | Big Data & Society (JOURNAL) |
| Identificadores de la revista | ISSN: 2053-9517 • E-ISSN: 2053-9517 |
| Editorial | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/20539517251320012 |
| OpenAlex | W4408557396 |
| Idioma | EN |
| Citas recibidas | 5 |
| Referencias citadas | 35 |
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
Boundary-work · Economic geography · Economics · Political economy · Political science · Politics · Social science · Sociology · Computer Science · Engineering · Global Security and Public Health · Law
Secondary Use of Health Data in Canada and the European Union
Selective visibility in datafied states
A call for action to strengthen stakeholder readiness for ICF data exchange in European health data space
Collaborative Governance Strategies for Trusted Data Spaces in Marine Ranching
Should I provide my health data for research? Citizens assessing the value of data provision
Abductive Analysis
Interpretation in policy analysis
Helsedata som gullgruve
The European health data space
Medical research, Big Data and the need for privacy by design
The politics of belonging intersectional contestations
Understanding the care.data conundrum
Detaching data from the state
Use of tissue and health data
Constructing the data economy
A code for care and control
Caring for data
One‐stop Shops for Social Welfare
From health to wealth
Questioning the rhetoric of a ‘willing population’ in Finnish biobanking
National interests and international collaboration
Citizen-Person
Emotional labour in the collaborative data practices of repurposing healthcare data and building data technologies
Dangers of the digital fit
The Nordic data imaginary
In search of 'extra data
Health in data space
Institutions, infrastructures, and data friction - Reforming secondary use of health data in Finland
On samples, data, and their mobility in biobanking
From Administrative Infrastructure to Biomedical Resource
A solidarity paradox - welfare state data in global health data economy
Border work in the contact zone
A Space for Place in Sociology
De novo kin
| Citas por año | 5 |
|---|---|
| Intervalo de citas | 2025 - 2026 (2) |
| Altamente citado | No |