Journal Article (Review Article)

DKFZ-2025-02570

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Improving record linkage for health research-how to overcome deficiencies? [Verbesserung des Record Linkage für die Gesundheitsforschung in Deutschland – wie können Defizite behoben werden?]

Intemann, T. ; Kaulke, K. ; Kipker, D.-K. ; Lettieri, V. ; Stallmann, C. ; Schmidt, C. O. ; Bialke, M. ; Hampf, C. ; Stahl, D. ; Lablans, M.DKFZ* ; Kraywinkel, K. ; Bartholomäus, S. ; Näher, A.-F. ; Tremper, G.DKFZ* ; Lambarki, M.DKFZ* ; March, S. ; Prasser, F. ; Haber, A. C. ; Drepper, J. ; Schlünder, I. ; Kirsten, T. ; Pigeot, I. ; Sax, U. ; Buchner, B. ; Semler, S. C. ; Ahrens, W.

2025
Springer Heidelberg

Abstract: Linking different health data at the personal level (record linkage, RL) allows answering scientific questions that could otherwise not be answered by a single data source. Linked data therefore offer great potential for health research to improve prevention, treatment, and care at the population level. Personal health data are protected by strict legal regulations. Its use requires balancing legitimate interests in protecting personal data and health benefits. However, current laws and their interpretations in Germany place severe restrictions on health data RL such that its potential for improving health outcomes is still to be leveraged. In Germany, RL is also hindered by the lack of a unique identifier that enables error-free merging across different data sources. Overall, there is a lack of interoperable solutions to perform comprehensive RL across studies and data sources in a secure environment.In this article, we propose solutions for the linkage of personal health data from different sources based on the White Paper - Verbesserung des Record Linkage für die Gesundheitsforschung in Deutschland. Our proposed solutions include, among others, the establishment of a health ID and the creation of a decentralized federated research data infrastructure with central components. Although these proposals are in line with the General Data Protection Regulation, there is a need for further legal regulation in specific cases.

Keyword(s): Data linkage ; Data sharing ; FAIR principles ; Research data infrastructure ; Unique identifier

Note: 2025 Dec;68(12):1440-1449

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Contributing Institute(s):

1. Verbundinformationssysteme (E260)
2. DKTK HD zentral (HD01)

Research Program(s):

1. 315 - Bildgebung und Radioonkologie (POF4-315) (POF4-315)

Appears in the scientific report 2025

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Database coverage:
; Clarivate Analytics Master Journal List ; DEAL Springer ; DEAL Springer ; Essential Science Indicators ; IF < 5 ; JCR ; SCOPUS ; Science Citation Index Expanded ; Web of Science Core Collection

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