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.
The European Health Data Space can be a boost for research beyond borders
Ganna, Andrea, Angel Carracedo, Christian F. Christiansen, Emanuele Di Angelantonio, Pearl A. Dykstra, Angel M. Dzhambov, Roland Eils, Sara Green, Katharina L. Schneider, Tibor V. Varga, Anna-Leena Vuorinen, Luisa Zuccolo, Naja Hulvej Rod, and Klaus Hoeyer (2024). Nature Medicine, (online first)
Health in data space. Formative and Experiential Dimensions of Cross-Border Health Data Sharing
Hoeyer, K, S Green, A Martani, A Middleton, and C Pinel, Big Data and Society 11(1): 1-14. (2024)
The European health data space: Too big to succeed?
Luca Marelli, Marthe Stevens, Tamar Sharon, Ine Van Hoyweghen, Martin Boeckhout, Ilaria Colussi, Alexander Degelsegger-márquez, Seliem El-sayed, Klaus Høyer, Robin Van Kessel, Dorota Krekora Zając, Mihaela Matei, Sara Roda, Barbara Prainsack, Irene Schlünder, Mahsa Shabani, Tom Southerington. Health Policy. 2023
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, October 25.
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, September 21.
Hoeyer, K (2023) Making and Experiencing the European Health Data Space, Keynote at Revaluing European Research Infrastructures, University of Vienna, Austria, May 26
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, June 5.
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, June 3.
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, May 31
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, May 13
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, April 28
Hoeyer, K (2024) Data intensive medicine: Is there a role for social analysis? Invited talk at Department of Sociology, University of Zürich, Switzerland, April 19
Hoeyer, K (2024) Data: more, quicker, better. Data integration practices in contemporary healthcare. Invited talk at SUPSI, Lugano, Switzerland, April 15
Hoeyer, K (2024) Data work and the dissolving sense of reference. Invited talk to the STS Network, University of Gothenburg, Online, February 2.
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, November 30.
Hoeyer, K (2023) Data Paradoxes. Invited presentation in the Data and Digitalization series, University of Amsterdam, Department of Anthropology, The Netherlands, October 12.
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, September 21.
Hoeyer, K & Wadmann, S (2023) The Life and Death of Confidentiality. Invited talk during webinar, Ethical Innovation Hub, University of Lübeck, Germany, June 13.
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, June 8.
Podcast about data paradoxes hosted by Roanne van Voorst
Public seminar June 12, 2024: Call for Abstracts for Public seminar: The ends of data: theories, methods, and interventions in critical data and AI studies | The Event (ku.dk)
Public seminar March 11, 2024: The European Health Data Space: How will it affect research?
Article January 12, 2024: Her er fire gode råd til arbejdet med ny psykiatriaftale.
Sarah Wadmann, Anne Høyen Munk, Klaus Høyer, Lene Høgh, Ida Hageman, Lone Bjørklund, Mette Falkenberg Krantz (2024) Syv eksperter. Altinget, 12 Januar 2024.
Funded by
Staff
| Name | Title | Phone | |
|---|---|---|---|
| Butola, Srijan | PhD Fellow | +4535326426 |
Other staff
| Name | |
| Andrea Martani | andrea.martania@unibas.ch |
| Cleménce Pinel | clemence@post.bgu.ac.il |