Evidence map›Paper›PMID 38836701›Full record

ReviewBriefings in bioinformatics2024

Sharing sensitive data in life sciences: an overview of centralized and federated approaches.

Maria A Rujano, Jan-Willem Boiten, Christian Ohmann, Steve Canham, Sergio Contrino, Romain David, Jonathan Ewbank, Claudia Filippone, Claire Connellan, Ilse Custers and 12 more

Abstract readReview
In one paragraph

Review in Briefings in bioinformatics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.

0numbers the graph read from it
0cells of the map it votes in
13citing 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

13 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Article
  5. Beyond the dataset: integrating public voices in data science.Research involvement and engagement · 2026
    Article
  6. Article
  7. Article
  8. Review
  9. Article
  10. Article
  11. Review
  12. Article
  13. Article
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

22 authors.

Maria A RujanoEuropean Clinical Research Infrastructure Network (ECRIN), Boulevard Saint Jacques 30, 75014, Paris, France.
Jan-Willem BoitenFoundation Lygature, Jaarbeursplein 6, 3521 AL, Utrecht, The Netherlands.
Christian OhmannEuropean Clinical Research Infrastructure Network (ECRIN), Boulevard Saint Jacques 30, 75014, Paris, France.
Steve CanhamEuropean Clinical Research Infrastructure Network (ECRIN), Boulevard Saint Jacques 30, 75014, Paris, France.
Sergio ContrinoEuropean Clinical Research Infrastructure Network (ECRIN), Boulevard Saint Jacques 30, 75014, Paris, France.
Romain DavidEuropean Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL), rue du Trône 98/Boîte 4B, 1050, Brussels, Belgium.
Jonathan EwbankEuropean Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL), rue du Trône 98/Boîte 4B, 1050, Brussels, Belgium.
Claudia FilipponeEuropean Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL), rue du Trône 98/Boîte 4B, 1050, Brussels, Belgium.
Claire ConnellanEuropean Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL), rue du Trône 98/Boîte 4B, 1050, Brussels, Belgium.
Ilse CustersFoundation Lygature, Jaarbeursplein 6, 3521 AL, Utrecht, The Netherlands.
Rick van NulandFoundation Lygature, Jaarbeursplein 6, 3521 AL, Utrecht, The Netherlands.
Michaela Th MayrhoferBiobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC), Neue Stiftingtalstrasse 2/B/6, 8010, Graz, Austria.
Petr HolubBiobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC), Neue Stiftingtalstrasse 2/B/6, 8010, Graz, Austria.
Eva García ÁlvarezBiobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC), Neue Stiftingtalstrasse 2/B/6, 8010, Graz, Austria.
Emmanuel BacryHealth Data Hub (HDH), rue Georges Pitard 9, 75015, Paris, France.
Nigel HughesJanssen Research and Development, Antwerpseweg 15, 2340, Beerse, Belgium.
Mallory A FreebergEuropean Molecular Biology Laboratory (EMBL), European Bioinformatics Institute (EBI), Wellcome Genome Campus, CB10 1SD, Hinxton, Cambridgeshire, United Kingdom.
Birgit SchaffhauserDepartment of Clinical Neurosciences, Centre Hospitalier Universitaire Vaudois (CHUV), Rue du Bugnon 21, 1011, Lausanne, Switzerland.
Harald WagenerCenter for Digital Health, BIH@Charité University Medicine, Anna-Louisa-Karsch-Straße 2, 10178, Berlin, Germany.
Alex Sánchez-PlaDepartment of Genetics, Microbiology and Statistics, Universitat de Barcelona, Diagonal 643, 08028, Barcelona, Spain.
Guido BertoliniLaboratory of Clinical Epidemiology, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Via GB Camozzi 3, 24020, Ranica (Bergamo), Italy.
Maria PanagiotopoulouEuropean Clinical Research Infrastructure Network (ECRIN), Boulevard Saint Jacques 30, 75014, Paris, France.ORCID 0000-0002-4221-7254

Funding

European Union's Horizon 2020 Framework Programme 824087European Union's Horizon Europe Framework Programme 101057726
6 · The paper itself

Abstract

Biomedical data are generated and collected from various sources, including medical imaging, laboratory tests and genome sequencing. Sharing these data for research can help address unmet health needs, contribute to scientific breakthroughs, accelerate the development of more effective treatments and inform public health policy. Due to the potential sensitivity of such data, however, privacy concerns have led to policies that restrict data sharing. In addition, sharing sensitive data requires a secure and robust infrastructure with appropriate storage solutions. Here, we examine and compare the centralized and federated data sharing models through the prism of five large-scale and real-world use cases of strategic significance within the European data sharing landscape: the French Health Data Hub, the BBMRI-ERIC Colorectal Cancer Cohort, the federated European Genome-phenome Archive, the Observational Medical Outcomes Partnership/OHDSI network and the EBRAINS Medical Informatics Platform. Our analysis indicates that centralized models facilitate data linkage, harmonization and interoperability, while federated models facilitate scaling up and legal compliance, as the data typically reside on the data generator's premises, allowing for better control of how data are shared. This comparative study thus offers guidance on the selection of the most appropriate sharing strategy for sensitive datasets and provides key insights for informed decision-making in data sharing efforts.

Indexed as

Biological Science DisciplinesInformation DisseminationHumansMedical Informaticsbiomedical datacentralized modeldata sharingFAIR principlesfederated modelGDPR

Identifiers

PMID38836701
PMCPMC11151787

What Socratic holds

Textmetadata
LicenceCC BY
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 Socratic graph.