DataSpace

 

DataSpace is an EU funded project exploring what is driving the establishment of cross-border health-data infrastructures, which types of infrastructures are being established, with which implications for whom.

 

Healthcare is increasingly datafied and a wide range of actors – patients, clinicians, administrators, policymakers and industry – want to be able to exchange and access health data across national boundaries. Competing initiatives for fostering cross-border data integration proliferate, and the EU provides major investments, e.g. through the European Health Data Space. These massive investments will influence healthcare, administration and research, but we do not yet know how.

DataSpace explores what is driving the establishment of cross-border health-data infrastructures, which types of infrastructures are being established, with which implications for whom. Furthermore, we wish to explore how these new data infrastructures emerge in tandem with wider social changes where data have become constitutive for the lives we can live. With DataSpace we therefore explore and conceptualize how people experience themselves and the world around them with and through data.

We take the term ‘space’, empirically present in the EHDS initiative, and reinvigorate it theoretically to establish a vocabulary fitted for understanding data-intensive health environments. We suggest seeing data spaces as having both formative and experiential dimensions and explore how they interact. Concerning the formative dimensions, data spaces are enacted through promises, work, and users. Four experiential dimensions relate to what is experienced as right (legally and morally), true (epistemologically), present (phenomenologically) and valuable (economically, emotionally, and socially). This theoretical approach moves beyond problematic and archaic distinctions between the virtual and the real and provides a new understanding of how patients, clinicians, researchers, administrators, and industry shape healthcare with and through data.

 

 

Donia, J., Hoeyer, K., Reintjes, T., & Marelli, L. (2026). Selective visibility in datafied states: Examining the absence and presence of the European Health Data Space. Social Science & Medicine, 407, 119747. https://doi.org/https://doi.org/10.1016/j.socscimed.2026.119747

El-Mahdi, M., & Hoeyer, K. (2026). Bold claims about health data: Exploring economic estimates in policy and consultancy reports. Big Data & Society, 13(3). https://doi.org/10.1177/20539517261473362

Forster, R. B., Alvarez, E. G., Zucco, A. G., Bernal-Delgado, E., Diallo, G., Estupiñán-Romero, F., Ganna, A., Gorman-Asal, M., Hilmarsen, C., Holub, P., Hoeyer, K., Rawat, A., Rod, N. H., Vuorinen, A.-L., & Varga, T. V. (2025). User journeys in cross-European secondary use of health data: Insights ahead of the European Health Data Space. European Journal of Public Health, 35(Supplement_3), iii18–iii24. https://doi.org/10.1093/eurpub/ckaf096

Ganna, A., Carracedo, A., Christiansen, C. F., Di Angelantonio, E., Dykstra, P. A., Dzhambov, A. M., Eils, R., Green, S., Schneider, K. L., Varga, T. V., Vuorinen, A.-L., Zuccolo, L., Rod, N. H., & Hoeyer, K. (2024). The European Health Data Space can be a boost for research beyond borders. Nature Medicine, 30(11), 3053–3056. https://doi.org/10.1038/s41591-024-03246-6

Haase CB & Hoeyer K (2026) Of knights and knaves, charlatans and crooks: The data practices of quality management in general practice. SSM - Qualitative Research in Health 10: 100846. DOI: 10.1016/j.ssmqr.2026.100846

Hoeyer, K. (2026). 14 Organising Cross-Border Health Data Infrastructures. In B. Marent (Ed.), De Gruyter Handbook of Digital Health and Society (pp. 233–254). De Gruyter. https://doi.org/10.1515/9783111247854-014

Hoeyer, K., & Green, S. (2026). The right standard for the job? On the limits of standard setting as a tool for governing commercial actors. Policy Studies, 47(2), 225–235. https://doi.org/10.1080/01442872.2024.2415149

Hoeyer, K., Green, S., Martani, A., Middleton, A., & Pinel, C. (2024). Health in data space: Formative and experiential dimensions of cross-border health data sharing. Big Data & Society, 11(1), 1–14. https://doi.org/10.1177/20539517231224258

Hoeyer, K., Munk, A. H., & Wadmann, S. (2025). ​​Data on the Mind:​ How the Data on the Use of Force in Psychiatry Interacts with Professional Judgment. Medicine Anthropology Theory, 12(1), 1–28. https://doi.org/10.17157/mat.12.1.9053

Hoeyer, K., & Skovgaard, L. (2026). What is the problem and what can be done when data sharing challenges public legitimacy? Nature Communications. https://doi.org/10.1038/s41467-026-77006-0

Marelli, L., Stevens, M., Sharon, T., Van Hoyweghen, I., Boeckhout, M., Colussi, I., Degelsegger-Márquez, A., El-Sayed, S., Hoeyer, K., Van Kessel, R., Zając, D. K., Matei, M., Roda, S., Prainsack, B., Schlünder, I., Shabani, M., & Southerington, T. (2023). The European health data space: Too big to succeed? Health Policy, 135, Article 104861. https://doi.org/10.1016/j.healthpol.2023.104861

Martani, A., Skovgaard, L., Neubert, J. J., Richter, G., & Marelli, L. (2026). The 2025 European health data space regulation: Implementation challenges in harmonising opt-out rules for reusing health data. Health Policy, 174, Article 105764. https://doi.org/10.1016/j.healthpol.2026.105764

Porta, V., Fors Connolly, A.-M., Rod, N. H., Hoeyer, K., Van Hoyweghen, I., Botrugno, C., Lucivero, F., Testa, G., & Marelli, L. (2026). A qualitative comparison of data infrastructures for COVID-19 health-related data: Lessons for the European Health Data Space. Policy Studies, 47(2), 338–358. https://doi.org/10.1080/01442872.2025.2486159

Sheikh, Z. A., Middleton, A., & Jensen, A. M. B. (2026). Waiting as a frontier: (Un)making patients for uterus transplantation in Denmark. Social Science & Medicine, 401, Article 119291. https://doi.org/10.1016/j.socscimed.2026.119291

Skovgaard, L., Ekstrøm, C. T., Svendsen, M. N., & Hoeyer, K. (2024). Survey of attitudes in a Danish public towards reuse of health data. PLOS ONE, 19(12), 1–14. https://doi.org/10.1371/journal.pone.0312558

 

 

Avlona, N. R. (2025) Data quality in medical AI: From techno-legal imperatives to invisible data labour. Conference presentation at Historical Materialism Athens 2025, Panteion University, Athens, Greece, 26 April.

Avlona, N. R. (2024) Data quality as a paradox in the development of medical AI systems: matters of compliance and labor. Invited talk at the Faculty of Law – Law Center for Health and Life and the Institute of Information Law, University of Amsterdam, The Netherlands, 10 December.

El-Mahdi, M. (2025) Value of Health Data: On the Movement of Estimates in Policy and Consultancy Reports. Conference presentation at Nordic STS Conference 2025, Stockholm, Sweden, 12 June.

Hoeyer, K. (2026) Digital integration og dataparadokser: Dansk praksis i en ny geopolitisk kontekst. Keynote address at the annual conference, eSundhedsobservatoriet, Odense, Denmark, 7 October.

Hoeyer, K. (2026) Real-world data and testing gone (in to the) wild. Paper presented at EASST bi-annual conference in Krakow, Poland, 9 September.

Hoeyer, K. (2026) Vulnerability and Strength. Cross-border health data infrastructures in a time of geopolitical turmoil. Presentation at DASTS annual meeting, Aalborg University, Copenhagen, Denmark, 30 June.

Hoeyer, K. (2026) Law vs (geo)politics – who regulates use and value of health data. Invited participation in online panel debate with Santa Slokenberga, Workshop on Public Good or Private Gain. The Future of Health Data Governance. University of Basel, Switzerland, 28 May.

Hoeyer, K. (2026) The mirage of a world-brain of global health data: STS facing Goliath. Keynote at the Annual STS Conference in Graz, Austria, 5 May.

Hoeyer, K. (2026) Data Paradoxes. On the implications of national and international integration. Invited talk at Danish Institute for Advanced Study. University of Southern Denmark, Odense, Denmark, 4 March.

Hoeyer, K. (2026) Deling af sundhedsdata over grænser: Hvad betyder ny lovgivning på området? Invited presentation, Infektionsmedicinsk afdeling, Hvidovre Hospital, Copenhagen, Denmark, 23 February.

Hoeyer, K. (2025) Dataintegration. Invited presentation to the National Service Platform team at the Danish Health Data Authority, Copenhagen, 21 October.

Hoeyer, K. (2025) The European Health Data Space …and the global politics of data dreams and desires. Keynote at Responsible AI: Promises, Pitfalls, and Practices Symposium, Technical University of Munich, Munich, Germany, 9 April.

Hoeyer, K. (2025) Sharing health data across borders. Why is it important, how is it regulated, and what are the social, political, and scientific implications? Invited presentation in the Food4Thought series, MCRI, Melbourne, Australia, 2 February.

Hoeyer, K. (2024) Intangible infrastructures: Using your own body as a research tool. Invited talk at the UCPH Digital Health Network, University of Copenhagen, Copenhagen, Denmark, 14 November.

Hoeyer, K. (2024) What makes research socially robust? Reflections on the social and ethical implications of frontier biomedical research. Invited talk in the BioMetra lecture series, LITA, University of Milano, Milano, Italy, 10 October.

Hoeyer, K. (2024) “All the data from everywhere all at once”: Data integration, AI imaginaries, and their unpredictable outcomes. Keynote at the joint WASH, WASH-HS, and LifeSciLab annual conference, Gothenburg, Sweden, 25 September.

Hoeyer, K. (2024) “All the data from everywhere all at once”: Visions and practicalities in data integration. Keynote at BBMRI-ELSI annual meeting, Lyon, France, 5 June.

Hoeyer, K. (2024) The European health data space: Populations, populism, or public legitimacy? Invited talk at the Annual Meeting of European Society of Human Genetics (ESHG), Berlin, Germany, 3 June.

Hoeyer, K. (2024) Re-placing data: Intensified data sourcing in healthcare and the urge to share data across borders. Invited talk at RUSTlab, Bochum University, Germany, 31 May.

Hoeyer, K. (2024) Data som samlingspunkt: Dataarbejde, dataerfaringer, og nye spørgsmål til vores datapraksisser. Keynote at Annual meeting for the Research units in general practice, Middelfart, Denmark, 13 May.

Hoeyer, K. (2024) The enduring dream of a world brain: Cross-border data infrastructures in healthcare. Invited talk at Department of STS, Technical University Munich, München, Germany, 28 April.

Hoeyer, K. (2024) Data intensive medicine: Is there a role for social analysis? Invited talk at Department of Sociology, University of Zürich, Switzerland, 19 April.

Hoeyer, K. (2024) Data: more, quicker, better. Data integration practices in contemporary healthcare. Invited talk at SUPSI, Lugano, Switzerland, 15 April.

Hoeyer, K. (2024) Data work and the dissolving sense of reference. Invited talk to the STS Network, University of Gothenburg, Online, 2 February.

Hoeyer, K. (2023) Et datadrevet sundhedsvæsen – er det overhovedet en god idé? Invited talk at Dansk Selskab for Sundhedsantropologi (Danish Society for Medical Anthropology), Online, 30 November.

Hoeyer, K. (2023) Data Paradoxes. Invited presentation in the Data and Digitalization series, University of Amsterdam, Department of Anthropology, The Netherlands, 12 October.

Hoeyer, K. (2023) The European Health Data Space: How are we to understand its impact on clinical relations? Keynote on the 4th SymPCa Conference. Sommerøy, Tromsø, Norway, 21 September.

Hoeyer, K., & Wadmann, S. (2023) The Life and Death of Confidentiality. Invited talk during webinar, Ethical Innovation Hub, University of Lübeck, Germany, 13 June.

Hoeyer, K. (2023) Hvad forventer vi os af data – og hvad får vi? Invited plenary talk at the Annual Meeting for the national organization for patient pathway coordinators. Kolding, Denmark, 8 June.

Hoeyer, K. (2023) Making and Experiencing the European Health Data Space. Keynote at Revaluing European Research Infrastructures, University of Vienna, Austria, 26 May.

Hoeyer, K. (2022) The gap between policy claims and likely gains. Invited participation in the roundtable Towards the European Health Data Space, KU Leuven, Leuven, Belgium, 25 October.

Neubert, J. J. (2026) Cross-border medications in Europe: Between imagined futures and meantime practices. Conference presentation at the EASST2026, Kraków, Poland, 11 September.

Neubert, J. J. (2026) “Effectively you’re your own doctor.” Gender-affirming care, bodily autonomy, & shifting medical authority in Scandinavia. Conference presentation at the Danish Gender Conference 2026, Odense, Denmark, 3 June.

Neubert, J. J. (2025) Transing healthcare: The cross-border dimensions of acquiring gender-affirming hormones. Paper presentation at the workshop Digital Spaces and DIY Health: Infrastructures, Activism, and Networks, Queen Mary University of London, United Kingdom, 19 September.

Neubert, J. J. (2025) Transing healthcare: The cross-border dimensions of acquiring gender-affirming hormones. Conference presentation at the 7th Nordic STS Conference 2025, Stockholm, Sweden, 11 June.

Neubert, J. J. (2025) Acquiring hormones from abroad for gender-affirming care—reflexions on gatekeepers and the necessity of cross-border healthcare. Conference presentation at AsSIST-UK Biannual Conference, Edinburgh, United Kingdom, 3 June.

 

 

Media and podcasts


Podcast about data paradoxes hosted by Roanne van Voorst

Articles and commentary

Public seminars

 

This lecture series is an attempt to address these various splinters that have resulted from the way in which data continues to smash through existing norms and practices. Or, one could ask, is it merely the next step towards perfecting ideals already held, and might even be cherished – such as those of complete knowledge and transparency? In either case, what we have is a need to grasp these phenomena so that we can prepare ourselves intellectually and practically to engage with these issues. To do so, this series plans on bringing together academic voices working on data and digital infrastructures, as well as related topics such as the experiential dimensions of living with data, the epistemological and ontological aspects of data, the political economy of data, and broader questions of power and politics.

Through these lectures we therefore wish to engage with scholars who are already working on the challenges these novel phenomena bring up. But we also hope to cultivate an environment of active audience participation, from a heterogenous set of disciplinary, practical and technical backgrounds, so as to capture these issues in all their breadth, depth and complexity. For, if data permeates, increasingly, into all aspects of our lives, then structured contributions must constantly be supplemented with perspectives from beyond these frameworks. The lecture series aims to, therefore, meet the madness of the moment, that is this datafied world, with a productive and dialogic dynamism.

We are pleased to announce the first lecture in our series, with several additional events currently in preparation. So please stay tuned for upcoming talks and announcements.

1st Lecture

Representative synthetic tabular data?

Prof. Ericka Johnson, Linköping University

Time: 9 June 2026, 15:00-16:00

Place: CSS, Øster Farimagsgade 5A Room 7.0.34

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2nd Lecture

States of Solidarity: Data governance in digital societies

Prof. Barbara Prainsack, University of Vienna

Time: 16 June 2026, 11:00-12:00

Place: CSS, Øster Farimagsgade 5A Room 7.0.34

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3rd Lecture

Data Validation: The Infrastructural Configuration of ‘Femtech’ Health Data as Assets

Prof. Kean Birch, York University, Toronto, Canada

Time: 18 August 2026, 14:00–15:00

Place: CSS, Øster Farimagsgade 5A Room 5.0.22

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4th Lecture

Making data work: Infrastructuring Challenges of Artificial Intelligence in Healthcare

Prof. Claus Bossen, Aarhus University

Time: 22 September 2026, 14:00-15:00

Place: CSS, Øster Farimagsgade 5A Room 5.0.22

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5th Lecture

Life and Death in Data under an Authoritarian State

Prof. Mary F.e. Ebeling, Drexel University

Time: 20 October 2026, 11:00-12:00

Place: CSS, Øster Farimagsgade 5A Room 5.0.28

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Staff

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Other staff

Name Email
Andrea Martani andrea.martania@unibas.ch
Cleménce Pinel clemence@sund.ku.dk