Federated Reuse of Participant-Level Data across Health Data Commons: Evidence, Insights, & Future Directions

Effective pandemic preparedness depends on the ability to identify, access and reuse health data across borders rapidly. This requires knowing what data and capabilities exist, how infrastructures are governed, which standards they use, and under what conditions data can be accessed or analysed. This work is central to the BE READY European Partnership for Pandemic Preparedness, which aims to strengthen Europe's capacity to coordinate research and respond to emerging infectious disease threats. Comparable, machine-actionable implementation metadata can help BE READY connect existing infrastructures, identify interoperability and governance barriers, and guide strategic investment. This presentation was delivered at the Research Data Alliance (RDA) Plenary 27, hosted by UK Research and Innovation (UKRI), under the theme "Shaping a global open research commons." It examines how fragmented health data infrastructures can become part of a connected, interoperable and sustainable global research ecosystem. The presentation reports two outputs from the RDA Health Data Commons GORC Profile Working Group. The first is the pilot of an implementation metadata survey and profile, building on the RDA Global Open Research Commons (GORC) International Model and FAIR, CARE and TRUST principles. The profile captures technical, legal, governance and equity characteristics of health data commons. Two national biomedical data infrastructures had piloted the survey. The second output is a scoping review of 47 health data infrastructures across 26 countries, described in 74 publications. The review identifies significant reporting gaps in the characteristics needed for interoperability and reuse. Metadata standards were reported for nine infrastructures, APIs for six, identifiers and provenance for two each, and machine-actionable permissions for none. Seven infrastructures supported federated analysis, while three described federated governance. Twenty-one reported legal or governance barriers. Only three described benefit-sharing arrangements, and none reported benefits returned to patients or communities. Just 10 papers reported empirical evidence. These findings reflect gaps in published reporting, which may differ from actual implementation. The RDA Working Group proposes refinements to the GORC International Model covering omics and bioimaging provenance, federated data reuse, and benefit sharing. It also proposes publishing implementation metadata as a living, queryable knowledge graph, supported by a community of practice among health data commons operators. For BE READY, this approach provides a foundation for understanding which European health data capabilities can be mobilised together during a health emergency, what barriers prevent their reuse, and where investment is most needed. More broadly, this work contributes to the RDA P27 ambition of shaping a global open research commons by transforming fragmented infrastructures into a connected, discoverable and interoperable ecosystem that supports research, pandemic preparedness and public health.