Network Meeting - 15 January 2026
- Arie Baak
- Feb 6
- 2 min read
TOPICS
The networking meeting of the 9th of December covered the following topics:
Welcome (including new members)
Introductions
Working groups, consultation moments and calendar
FAIR Implementation Guidance approach (Barend)
Starter Kit status (Arie)
Sandbox offering for EHDS mini pilot (4LifeSupport)
Parking lot & close
PRESENTATIONS
FAIR Implementation Guidance: A Practical Framework for Organizations - Barend Mons
The FAIR Implementation Guidance (FIG) initiative provides organizations with a practical roadmap for implementing FAIR data principles. The framework recognizes that FAIR is not binary—organizations don't need to achieve full FAIRness immediately. Instead, it offers four progressive levels: personal use, internal use within trusted environments, external use beyond organizational boundaries, and full machine-actionable use through FAIR data stations. This flexible approach allows organizations to start where they are and build toward their specific goals.
Central to the FIG approach is the role of recognized expert communities in domains like biodiversity, agriculture, and immunology. These communities develop and validate semantic models that others can reuse, preventing organizations from reinventing solutions. The framework operates on three parallel tracks—data, stations, and training—with emphasis on building independence through hands-on learning. AI tools assist in extracting and validating semantic models, while customized Starter Kits provide domain-specific packages of pre-approved platforms, verification tools, and validated models.
The framework addresses regulatory compliance (particularly EHDS requirements), cross-domain interoperability, and common misconceptions like the belief that FAIR means open data. With integration pathways for research proposals, the FIG approach positions FAIR implementation as a reusable infrastructure component for European research programs and beyond.
EHDS Mini Pilot: A Sandbox Approach to Health Data Space Compliance - Sander van Boom
The EHDS mini pilot addresses European Health Data Space compliance requirements through a structured sandbox environment for testing data sharing infrastructure. Life Support, as a cooperative of multiple companies and partners, developed this offering to create a cohesive solution that brings together vendors while avoiding vendor lock-in. The approach balances clear package options for buyers with provider flexibility—all components must remain FAIR compliant and interoperable, allowing qualified providers to be mixed and matched based on specific organizational needs.
The mini pilot makes abstract EHDS concepts concrete by demonstrating what data stations and compliance mean in practical healthcare settings. The proposed configuration involves five stakeholder types: research institutions, university medical centers, patient societies, data space initiatives, and potentially government entities. Rare disease research provides an ideal use case, as this domain naturally requires distributed collaboration. The framework integrates data altruism concepts, allowing patient societies to manage their own data stations and control data availability independent of treating hospitals.
The six-month implementation follows a structured timeline: three months of preparation for use case specification, followed by kickoff, metadata development using ODRL licensing frameworks, installation and deployment with mock data, and concluding with evaluation. The mini pilot uses only mock data and defaults to open source publication of results, building a track record of successful vendor combinations while enabling organizations to understand the effort required for full FAIR and EHDS compliance.
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