Coping with Interoperability in the Development of A Federated Research Infrastructure: Achievements, Challenges and Recommendations from the JA Infact

Abstract Background: Information for Action is a Joint Action (JA InfAct on Health Information) promoted by the EU Member States and funded by the European Commission within the Third EU Health Programme (2014-2020) to create and develop solid sustainable infrastructure on EU health information. The main objective of this the JA-InfAct is to build an EU health information system infrastructure and strengthen its core elements by a) establishing a sustainable research infrastructure to support population health and health system performance assessment, b) strengthening the European health information and knowledge bases, as well as health information research capacities to reduce health information inequalities, and c) supporting health information interoperability and innovative health information tools and data sources.Method: Follsowing a federated analysis approach, JA-InfAct developed an ad hoc federated infrastructure based on distributing a well-defined process-mining analysis methodology to be deployed at each participating partners’ systems to reproduce the analysis and pooling the aggregated results from the analyses. To overcome the legal interoperability issues on international data sharing, data linkage and management, partners (EU regions) participating in the cases study worked coordinately to query their real-world healthcare data sources complying with a common data model, executed the process mining analysis pipeline on their premises, and shared the analysis results enabling international comparison and the identification of best practices on stroke care.Results: the ad hoc federated analysis infrastructure was designed and built upon open source technologies providing partners with the capacity to exploit their data and generate stroke care pathway analysis dashboards. These dashboards can be shared among the participating partners or to a coordination hub without legal issues enabling the comparative evaluation of the caregiving activities for acute stroke across regions.Nonetheless, the approach is not free of a number of challenges that have been solved, and new challenges that should be addressed in the eventual case of scaling up. For that eventual case, 12 recommendations on the different layers of interoperability have been provided. Conclusion: The JA InfAct federated analysis infrastructure has been able to cope with all levels of the interoperability -legal, organisational semantic and technological. Any proposal for extension would require upgrade so as to deal with new challenges on interoperability such as large scale application of GDPR principles, developing high-profile resources capacity across Europe, developing a common strategy to data quality assurance and preparedness for high performance computing and federated learning.