Evidence map›Paper›PMID 37399677›Full record

ArticleHealth policy (Amsterdam, Netherlands)2023

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 Hoeyer, Robin van Kessel and 7 more

Abstract read
In one paragraph

Article in Health policy (Amsterdam, Netherlands), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
33citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

33 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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  4. Can Canada learn from the European Health Data Space?Canadian journal of public health = Revue canadienne de sante publique · 2026
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Luca MarelliDepartment of Medical Biotechnology and Translational Medicine, University of Milan, Milan, 20129, Italy; Centre for Sociological Research, KU Leuven, Leuven, 3000, Belgium. Electronic address: luca.marelli@unimi.it.
Marthe StevensDepartment of Ethics and Political Philosophy and Interdisciplinary Hub for Digitalization and Society, Radboud University, Nijmegen, 6525, HT, the Netherlands.
Tamar SharonDepartment of Ethics and Political Philosophy and Interdisciplinary Hub for Digitalization and Society, Radboud University, Nijmegen, 6525, HT, the Netherlands.
Ine Van HoyweghenCentre for Sociological Research, KU Leuven, Leuven, 3000, Belgium.
Martin BoeckhoutLygature, Utrecht, 3521, AL, the Netherlands.
Ilaria ColussiBiobanking and BioMolecular resources Research Infrastructure. European Research Infrastructure Consortium (BBMRI-ERIC), Graz, 8010, Austria.
Alexander Degelsegger-MárquezDepartment of International Affairs, Policy, Evaluation and Digitalization, Gesundheit Österreich GmbH (Austrian National Public Health Institute), Vienna, 1010, Austria.
Seliem El-SayedDepartment of Political Science and Research Platform Governance of Digital Practices, University of Vienna, Vienna, 1010, Austria.
Klaus HoeyerDepartment of Public Health, University of Copenhagen, Copenhagen, 1014, Denmark.
Robin van KesselLSE Health, Department of Health Policy, London School of Economics and Political Science, London, WC2A 2AE, United Kingdom; Department of International Health, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, 6211LK, Netherlands.
Dorota Krekora ZającDepartment of Comparative Civil Law, Faculty of Law and Administration University of Warsaw, Warsaw, 00-927, Poland.
Mihaela MateiEuropean Clinical Research Infrastructure Network (ECRIN), Paris, 75013, France.
Sara RodaStanding Committee of European Doctors (CPME), Brussels, 1040, Belgium; LSTS - Law, Science, Technology & Society Research Group, and HALL - Health and Ageing Law Lab, Vrije University Brussels, Brussels, 1050, Belgium.
Barbara PrainsackDepartment of Political Science and Research Platform Governance of Digital Practices, University of Vienna, Vienna, 1010, Austria.
Irene SchlünderTMF e.V., Berlin, 10117, Germany.
Mahsa ShabaniFaculty of Law, Ghent University, Ghent, 9000-B, Belgium; Faculty of Law, University of Amsterdam, 1018, WV, Amsterdam, the Netherlands.
Tom SoutheringtonFinnish Biobank Cooperation (FINBB), Turku, 20540, Finland; Faculty of Law, University of Turku, 20014 Turun yliopisto, Finland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Health PolicyPolicy MakingHumansInformation DisseminationData governanceData sharingEHDSEuropean health data spacePublic value

Identifiers

PMID37399677
PMCPMC10448378

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.