Implementing a Nordic-Baltic Federated Health Data Network: a case report

• URL: http://arxiv.org/abs/2409.17865v1
• Date: Thu, 26 Sep 2024 14:15:54 GMT
• Title: Implementing a Nordic-Baltic Federated Health Data Network: a case report
• Authors: Taridzo Chomutare, Aleksandar Babic, Laura-Maria Peltonen, Silja Elunurm, Peter Lundberg, Arne J\"onsson, Emma Eneling, Ciprian-Virgil Gerstenberger, Troels Siggaard, Raivo Kolde, Oskar Jerdhaf, Martin Hansson, Alexandra Makhlysheva, Miroslav Muzny, Erik Ylip\"a\"a, S{\o}ren Brunak and Hercules Dalianis
• Abstract summary: We formed an interdisciplinary consortium to develop a feder-ated health data network, comprised of six institutions across five countries. The objective of this report is to offer early insights into our experiences developing this network.
• Score: 56.96209893909196
• License: http://arxiv.org/licenses/nonexclusive-distrib/1.0/
• Abstract: Background: Centralized collection and processing of healthcare data across national borders pose significant challenges, including privacy concerns, data heterogeneity and legal barriers. To address some of these challenges, we formed an interdisciplinary consortium to develop a feder-ated health data network, comprised of six institutions across five countries, to facilitate Nordic-Baltic cooperation on secondary use of health data. The objective of this report is to offer early insights into our experiences developing this network. Methods: We used a mixed-method ap-proach, combining both experimental design and implementation science to evaluate the factors affecting the implementation of our network. Results: Technically, our experiments indicate that the network functions without significant performance degradation compared to centralized simu-lation. Conclusion: While use of interdisciplinary approaches holds a potential to solve challeng-es associated with establishing such collaborative networks, our findings turn the spotlight on the uncertain regulatory landscape playing catch up and the significant operational costs.

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