WP9 – Data stewardship and sharing models has successfully concluded, and this article summarises the team’s accomplishments. The team was led by University Medical Center Groningen MOLGENIS team (UMCG) with contributions from Fraunhofer, EBRAINS, BBMRI-ERIC, MU, NTNU.
The objective of WP9 was to establish sustainable strategies for IT technologies, data stewardship, and federated analysis within the INTEGRATE-LMedC network. Over its 12-month duration, the team focused on identifying suitable IT technologies and architectures to ensure long-term availability and accessibility of critical medical data (Task 9.1). Additionally, WP9 developed sustainable procedures for data and sample requests, implementing a structured authorisation process to facilitate secure access within the network (Task 9.2).
To further enhance data-driven medical research, WP9 also conducted a feasibility study on federated data analysis, assessing the integration of large medical cohorts across multiple institutions (Task 9.3).
WP9’s contribution to INTEGRATE-LMedC
WP9 has focused on comparison of data-sharing technologies, resulting in a requirement analysis that includes key steps of the data user journey: data discovery, data access negotiation and data analysis (D9.1). Its goal is to identify existing or currently developed information technologies and architectures that are suitable for LMedC data stewardship and have long-term availability.
The deliverable report gives an intricate analysis and comparison of IT infrastructures, such as the Norwegian trusted environment system NORTRE, the digital research infrastructure EBRAINS, BBMRI-ERIC discovery and access negotiation pipeline, the EUCAIM cancer image catalogue, GDI/Solve-RD genomics infrastructure, and federated analysis infrastructures using cataloguing procedures together with DataSHIELD/MOLGENIS Armadillo.
The data-sharing models of these existing infrastructures were compared based on several factors, including whether they focus on data versus metadata, aggregated versus individual-level data, anonymised versus pseudonymised data, and/or on centralised versus federated/distributed data sharing.
Additionally, WP9 delivered Milestone 9.3 which specifies a demonstrator and workshop showcasing the analysis procedures that will be developed in a pilot for federated analysis in WP12. The combined vision of WP9 and WP11 is to move towards a federated platform that integrates the features of the BBMRI-ERIC Directory, its Federated Platform, the BBMRI-ERIC Negotiator, the EU health data catalogue, as well as EBRAINS and Data SHIELD approaches.
This should combine their features, making it easier for users to discover, select, request and access samples and data related to large medical cohorts while ensuring interoperable standards to prevent lock-in and maximise future integration into the European Health Data Space (EHDS) and and the European Open Science Cloud (EOSC).
The plan is to further use applications built on the MOLGENIS and EBRAINS platforms in WP12, which integrate solutions both for the discovery and sharing of samples, as well as sharing and (federated) analysis of data:
- The BBMRI-ERIC Directory, Federated Platform and Negotiator; integrated with
- WP11 Integrate-LMedC catalogue as part of European Health Research Data and Sample Catalogue, in combination with WP9 proposed federated data access nodes such as EBRAINS and DataSHIELD.
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