Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform

Dieter Hayn; Emanuel Sandner; Abishaa Vengadeswaran; Elena-Alexandra Tãtaru; Mark Wilkinson; Marc  Hanauer; Karl Kreiner; Günter Schreier

doi:10.3233/SHTI240683

Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform

Dieter Hayn (Author and Speaker), Emanuel Sandner, Abishaa Vengadeswaran, Elena-Alexandra Tãtaru, Mark Wilkinson, Marc Hanauer, Karl Kreiner, Günter Schreier

Digital Health Information Systems

Research output: Chapter in Book or Conference Proceedings › Conference Proceedings with Oral Presentation › peer-review

Abstract

Secondary use of data for research purposes is especially important in
rare diseases (RD), since, per definition, data are sparse. The European Joint Programme on Rare Diseases (EJP RD) aims at developing an RD infrastructure which supports the secondary use of data. Significant amounts of RD data are a) distributed and b) available only in pseudonymised format. Privacy-Preserving Record Linkage (PPRL) concerns the linking of such distributed datasets without disclosing the participant’s identities. We present a concept for linking a PPRL Service to the EJP RD Virtual Platform (VP). Level 1 (resource discovery) connection is provided by running an FDP within the PPRL Service. On Level 2 (data discoverability), the PPRL Service can represent both, an individual and a catalog endpoint. Our solution can count patients in PPRL-supporting resources, count duplicates only once, and count only patients registered to multiple resources. Currently, we are preparing the deployment within the EJP RD VP.

Original language	English
Title of host publication	Digital Health and Informatics Innovations for Sustainable Health Care Systems
Subtitle of host publication	Proceedings of MIE 2024
Editors	John Mantas, Arie Hasman, George Demiris, Kaija Saranto, Theodoros N. Arvanitis, Ivana Ognjanovi, Arriel Benis, Parisis Gallos, Emmanouil Zoulias, Elisavet Andrikopoulo
Publisher	IOS Press BV
Chapter	S4.12 - INTEROPERABILITY AND STANDARDS 6
Pages	1442-1446
Number of pages	5
Volume	316
ISBN (Electronic)	978-1-64368-533-5
DOIs	https://doi.org/10.3233/SHTI240683
Publication status	Published - 29 Aug 2024
Event	Medical Informatics Europe Conference: Digital Health and Informatics Innovations for Sustainable Health Care Systems - Athens, Greece Duration: 25 Aug 2024 → 29 Aug 2024 Conference number: 34 https://mie2024.org/

Publication series

Name	Studies in Health Technology and Informatics
Publisher	IOS Press
Volume	316
ISSN (Print)	0926-9630
ISSN (Electronic)	1879-8365

Conference

Conference	Medical Informatics Europe Conference
Abbreviated title	MIE 2024
Country/Territory	Greece
City	Athens
Period	25/08/24 → 29/08/24
Internet address	https://mie2024.org/

Research Field

Exploration of Digital Health

Keywords

Rare diseases
privacy-preserving record linkage (PPRL)
research infrastructure
secondary use
European health data space (EHDS)

Access to Document

10.3233/SHTI240683Licence: CC BY-NC

Cite this

Hayn, D., Sandner, E., Vengadeswaran, A., Tãtaru, E.-A., Wilkinson, M., Hanauer, M., Kreiner, K., & Schreier, G. (2024). Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform. In J. Mantas, A. Hasman, G. Demiris, K. Saranto, T. N. Arvanitis, I. Ognjanovi, A. Benis, P. Gallos, E. Zoulias, & E. Andrikopoulo (Eds.), Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024 (Vol. 316, pp. 1442-1446). (Studies in Health Technology and Informatics; Vol. 316). IOS Press BV. https://doi.org/10.3233/SHTI240683

Hayn, Dieter ; Sandner, Emanuel ; Vengadeswaran, Abishaa et al. / Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform. Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. editor / John Mantas ; Arie Hasman ; George Demiris ; Kaija Saranto ; Theodoros N. Arvanitis ; Ivana Ognjanovi ; Arriel Benis ; Parisis Gallos ; Emmanouil Zoulias ; Elisavet Andrikopoulo. Vol. 316 IOS Press BV, 2024. pp. 1442-1446 (Studies in Health Technology and Informatics).

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abstract = "Secondary use of data for research purposes is especially important in rare diseases (RD), since, per definition, data are sparse. The European Joint Programme on Rare Diseases (EJP RD) aims at developing an RD infrastructure which supports the secondary use of data. Significant amounts of RD data are a) distributed and b) available only in pseudonymised format. Privacy-Preserving Record Linkage (PPRL) concerns the linking of such distributed datasets without disclosing the participant{\textquoteright}s identities. We present a concept for linking a PPRL Service to the EJP RD Virtual Platform (VP). Level 1 (resource discovery) connection is provided by running an FDP within the PPRL Service. On Level 2 (data discoverability), the PPRL Service can represent both, an individual and a catalog endpoint. Our solution can count patients in PPRL-supporting resources, count duplicates only once, and count only patients registered to multiple resources. Currently, we are preparing the deployment within the EJP RD VP.",

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Hayn, D , Sandner, E, Vengadeswaran, A, Tãtaru, E-A, Wilkinson, M, Hanauer, M, Kreiner, K & Schreier, G 2024, Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform. in J Mantas, A Hasman, G Demiris, K Saranto, TN Arvanitis, I Ognjanovi, A Benis, P Gallos, E Zoulias & E Andrikopoulo (eds), Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. vol. 316, Studies in Health Technology and Informatics, vol. 316, IOS Press BV, pp. 1442-1446, Medical Informatics Europe Conference, Athens, Greece, 25/08/24. https://doi.org/10.3233/SHTI240683

Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform. / Hayn, Dieter (Author and Speaker); Sandner, Emanuel; Vengadeswaran, Abishaa et al.
Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. ed. / John Mantas; Arie Hasman; George Demiris; Kaija Saranto; Theodoros N. Arvanitis; Ivana Ognjanovi; Arriel Benis; Parisis Gallos; Emmanouil Zoulias; Elisavet Andrikopoulo. Vol. 316 IOS Press BV, 2024. p. 1442-1446 (Studies in Health Technology and Informatics; Vol. 316).

Research output: Chapter in Book or Conference Proceedings › Conference Proceedings with Oral Presentation › peer-review

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AU - Vengadeswaran, Abishaa

AU - Tãtaru, Elena-Alexandra

AU - Wilkinson, Mark

AU - Hanauer, Marc

AU - Kreiner, Karl

AU - Schreier, Günter

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A2 - Hasman, Arie

A2 - Demiris, George

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A2 - Arvanitis, Theodoros N.

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Hayn D , Sandner E, Vengadeswaran A, Tãtaru EA, Wilkinson M, Hanauer M et al. Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform. In Mantas J, Hasman A, Demiris G, Saranto K, Arvanitis TN, Ognjanovi I, Benis A, Gallos P, Zoulias E, Andrikopoulo E, editors, Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. Vol. 316. IOS Press BV. 2024. p. 1442-1446. (Studies in Health Technology and Informatics). doi: 10.3233/SHTI240683

Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform

Abstract

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