Sensitive human data management, access, and analysis is delivering advancements in discovery and application of therapies to treat human disease. The generation and management of the majority of these data is transitioning from the research setting to the healthcare systems across Europe, and therefore is often subject to national/regional legislation that means these data are unable to leave local jurisdictions. As a result, the access to sensitive data that is consented for research use and/or the application of these data to the healthcare field is posed with new challenges to ensure that these data can be accessed in secure, effective, and efficient ways locally, and transnationally, in a federated manner - where the data remains in local jurisdictions but can be accessed across international borders.
The main goal for the ELIXIR Federated Human Data (FHD) Community is to position the Federated EGA (FEGA) framework as the core infrastructure driver to support human data sharing for research use-cases from nationally, European Commission, and/or internationally funded human health data sharing projects.
The Deliverables from this project will be incorporated by the FEGA governance framework to roadmap the maturity of the service, enabling FEGA to meet the needs of the sensitive human data management use cases from the ELIXIR Nodes. To accomplish this goal, the project will act as a coordination hub to establish contact points with Nodes and projects to gather existing and emerging use-cases, map the engagement with the projects and Federated EGA, identify areas for collaboration on common goals (e.g. synthetic cohorts for infrastructure testing purposes; cohort harmonisation - a huge task shared across many projects; and the identification and mapping of, shared use-cases), and act as a convening group to communicate the Federated EGA project status to the wider ELIXIR community.
This broad alignment role across Nodes and existing key projects will strategically place the Federated EGA infrastructure at the centre of European transnational sharing of sensitive human data.