Evidence mapPaperPMID 42499816Full record

ArticleDigital health

Lessons from federated networks for implementing the European health data space. Empirical study.

Magdalena Kogut-Czarkowska, Mahsa Shabani

Abstract read
In one paragraph

Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

2 authors.

Magdalena Kogut-CzarkowskaFaculty of Law and Criminology, Ghent University, Ghent, Belgium.ORCID https://orcid.org/0000-0003-4014-8328
Mahsa ShabaniFaculty of Law and Criminology, Ghent University, Ghent, Belgium.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objectives: To explore first-hand expert perspectives on the development and use of federated repositories for health data sharing, with a focus on their role in secondary use of health data and the European Health Data Space framework. Methods: A qualitative study was conducted using semi-structured interviews with 19 experts directly involved in developing federated health data repositories. Interview findings were thematically analysed to identify perceived benefits, limitations, and suitable use contexts for federated data-sharing models. Results: Federated networks were perceived as effective in contexts where they can support new opportunities for research data sharing, engage new data providers, and address trust-related barriers. However, participants also identified important limitations. These included high resource demands, complex governance requirements, privacy risks, and reduced suitability for certain types of research. Conclusion: Federated repositories may offer valuable governance and technical solutions for health data sharing, especially where trust and provider engagement are central concerns. Their benefits are context-dependent, and they are not suitable for all research scenarios. The findings contribute to debates on data governance for secondary use and the future role of federated infrastructures under the European Health Data Space.

Indexed as

EHDSfederated networksGDPRhealth datasecondary use

Identifiers

PMID42499816
PMCPMC13396562

What Socratic holds

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LicenceCC BY-NC
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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 Socratic graph.