FAIR Secure Provision and Use of Health Data in Norway

ongoing

In Norway the organisational unit Health Data Service (HDS), within the Norwegian Directorate of e-health (HDS was transferred to the Norwegian Institute of Public Health (NIPH) after reorganization), has been established as the Norwegian health data access body (HDAB). The Norwegian HDAB has already set up basic services and infrastructures to provide data users with information about data sources through a national health metadata catalogue, and to record, process and reply to data access applications for several national health data holders (through helsedata.no). The general objective of this project is to enable Norway to expand services for its health data access body related to digital business capabilities for improved metadata content, secure processing of health data and providing cross-border connections for the large-scale deployment of HealthData@EU. This will be done through a project with the following work packages: - WP1 - Management and coordination, which will establish the appropriate management structure for the implementation of the project, including the coordination and monitoring of the overall progress of the different tasks of the project, while ensuring alignment with Norway's participation in European temporary governance for HealthData@EU. - WP2 – Communication, dissemination, training and education which will raise awareness, inform and present results, promote use of deliverables and guide users, target groups such as data users, data holders, SPE providers and data subjects regarding relevant project deliverables, and coordinate training initiatives for health data access body staff, data holders, SPE providers and data users. - WP3 – Evaluation, which will include performance monitoring and evaluation activities to assess the effectiveness of the implementation of the digital business capabilities in scope of this project. - WP4 - Sustainability, which will ensure that the digital business capabilities implemented in the scope of this project have a sustainability plan and business continuity plan beyond the duration of the project. - WP5 – Requirements for SPE, which will establish requirements that define an SPE so that existing analytics infrastructures in Norway can verify compliance with such requirements. - WP6 – Verification of SPE, which will establish verification procedures for analytics infrastructures against defined requirements to assist data users in the selection and assurance of SPE. - WP7 – Secure data transport to SPE, which will establish a foundation for secure data transport between registers (data holders) and SPEs, thus facilitating efficient and secure communication of health data both within and across national borders. - WP8 – Architecture, which will establish a target architecture and a form a strategy for Norway to provide cross-border services and infrastructures as part of HealthData@EU. - WP9 – Providing relevant metadata, which will strengthen metadata capabilities at data holder level and provide mandatory meta data according to the EHDS2 DCAT Health Extension. Furthermore, WP9 will explore new endpoints indicated in the EHDS proposal for innovative meta data standardisation, such as secure infrastructure elements and SPEs.