- Author
- Luca Marelli, Marthe Stevens, Tamar Sharon, Ine Van Hoyweghen, Martin Boeckhout, Ilaria Colussi, Alexander Degelsegger-Márquez, Seliem El-Sayed, Klaus Hoeyer, Robin van Kessel, Dorota Krekora Zając, Mihaela Matei, Sara Roda, Barbara Prainsack, Irene Schlünder, Mahsa Shabani (UGent) and Tom Southerington
- Organization
- Abstract
- In May 2022, the European Commission issued the Proposal for a Regulation on the European Health Data Space (EHDS), with the aims of granting citizens increased access to and control of their (electronic) health data across the EU, and facilitating health data re-use for research, innovation, and policymaking. As the first in a series of European domain-specific "data spaces", the EHDS is a high-stakes development that will transform health data governance in the EU region. As an international consortium of experts from health policy, law, ethics and the social sciences, we are concerned that the EHDS Proposal will detract from, rather than lead to the achievement of, its stated aims. We are in no doubt on the benefits of using health data for secondary purposes, and we appreciate attempts to facilitate such uses across borders in a carefully curated manner. Based on the current draft Regulation, however, the EHDS risks undermining rather than enhancing patient control over data; hindering rather than facilitating the work of health professionals and researchers; and eroding rather than increasing the public value generated through health data sharing. Therefore, significant adjustments are needed if the EHDS is to realize its promised benefits. Besides analyzing the implications for key groups and European societies at large who will be affected by the implementation of the EHDS, this contribution advances targeted policy recommendations to address the identified shortcomings of the EHDS Proposal.
- Keywords
- Health Policy, Public value, Data governance, Data sharing, EHDS, European health data space
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Citation
Please use this url to cite or link to this publication: http://hdl.handle.net/1854/LU-01H4AFWRTM88BQGMKC1QA488AQ
- MLA
- Marelli, Luca, et al. “The European Health Data Space : Too Big to Succeed?” HEALTH POLICY, vol. 135, Elsevier BV, 2023, doi:10.1016/j.healthpol.2023.104861.
- APA
- Marelli, L., Stevens, M., Sharon, T., Van Hoyweghen, I., Boeckhout, M., Colussi, I., … Southerington, T. (2023). The European health data space : too big to succeed? https://doi.org/10.1016/j.healthpol.2023.104861
- Chicago author-date
- Marelli, Luca, Marthe Stevens, Tamar Sharon, Ine Van Hoyweghen, Martin Boeckhout, Ilaria Colussi, Alexander Degelsegger-Márquez, et al. 2023. “The European Health Data Space : Too Big to Succeed?” HEALTH POLICY. Elsevier BV. https://doi.org/10.1016/j.healthpol.2023.104861.
- Chicago author-date (all authors)
- Marelli, Luca, Marthe Stevens, Tamar Sharon, Ine Van Hoyweghen, Martin Boeckhout, Ilaria Colussi, Alexander Degelsegger-Márquez, Seliem El-Sayed, Klaus Hoeyer, Robin van Kessel, Dorota Krekora Zając, Mihaela Matei, Sara Roda, Barbara Prainsack, Irene Schlünder, Mahsa Shabani, and Tom Southerington. 2023. “The European Health Data Space : Too Big to Succeed?” HEALTH POLICY. Elsevier BV. doi:10.1016/j.healthpol.2023.104861.
- Vancouver
- 1.Marelli L, Stevens M, Sharon T, Van Hoyweghen I, Boeckhout M, Colussi I, et al. The European health data space : too big to succeed? Vol. 135, HEALTH POLICY. Elsevier BV; 2023.
- IEEE
- [1]L. Marelli et al., “The European health data space : too big to succeed?,” HEALTH POLICY, vol. 135. Elsevier BV, 2023.
@misc{01H4AFWRTM88BQGMKC1QA488AQ,
abstract = {{In May 2022, the European Commission issued the Proposal for a Regulation on the European Health Data Space (EHDS), with the aims of granting citizens increased access to and control of their (electronic) health data across the EU, and facilitating health data re-use for research, innovation, and policymaking. As the first in a series of European domain-specific "data spaces", the EHDS is a high-stakes development that will transform health data governance in the EU region.
As an international consortium of experts from health policy, law, ethics and the social sciences, we are concerned that the EHDS Proposal will detract from, rather than lead to the achievement of, its stated aims. We are in no doubt on the benefits of using health data for secondary purposes, and we appreciate attempts to facilitate such uses across borders in a carefully curated manner. Based on the current draft Regulation, however, the EHDS risks undermining rather than enhancing patient control over data; hindering rather than facilitating the work of health professionals and researchers; and eroding rather than increasing the public value generated through health data sharing. Therefore, significant adjustments are needed if the EHDS is to realize its promised benefits.
Besides analyzing the implications for key groups and European societies at large who will be affected by the implementation of the EHDS, this contribution advances targeted policy recommendations to address the identified shortcomings of the EHDS Proposal.}},
articleno = {{104861}},
author = {{Marelli, Luca and Stevens, Marthe and Sharon, Tamar and Van Hoyweghen, Ine and Boeckhout, Martin and Colussi, Ilaria and Degelsegger-Márquez, Alexander and El-Sayed, Seliem and Hoeyer, Klaus and van Kessel, Robin and Zając, Dorota Krekora and Matei, Mihaela and Roda, Sara and Prainsack, Barbara and Schlünder, Irene and Shabani, Mahsa and Southerington, Tom}},
issn = {{0168-8510}},
keywords = {{Health Policy,Public value,Data governance,Data sharing,EHDS,European health data space}},
language = {{eng}},
pages = {{4}},
publisher = {{Elsevier BV}},
series = {{HEALTH POLICY}},
title = {{The European health data space : too big to succeed?}},
url = {{http://doi.org/10.1016/j.healthpol.2023.104861}},
volume = {{135}},
year = {{2023}},
}
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