A national research infrastructure project funded by the Research Council of Norway (2014-2019).
The project addressed the needs of the research community by establishing a research documentation service that offers improved documentation (metadata) of the health registries, statistical methods specifically developed for health registries, and statistical support service. The project enhances data security by facilitating the use of secure servers for storage and analysis of research data.
The HRR-project is coordinated by the University of Bergen, and carried out in close collaboration with the University of Tromsø, the Norwegian Institute of Public Health and the Norwegian Directorate of Health. The HRR infrastructure consortium also includes the two other large Norweigan universities, namely the Norwegian University of Science and Technology, the University of Oslo, as well as all four Regional Health Authorities in Norway. All partners are represented in the project’s steering group by high-level representatives from each institution. Thus the steering group constitutes a national network with a considerable influence in issues related to the Norwegian health registries.
Transition from developing, implementing to maintaining the infrastructure (2019-2024)
From 2019 funding from the Norwegian Research Council is ended, and the project is transitioned to a operating and maintaining the infrastructure – phase. The projects deliverances and the follow-up of these are strongly influenced by the new large national initiative, the Health Data Programme.
The work concerning metadata for health registries are transferred to the Health Data Programme, led by the Directorate of e-health. The programme has a project on Harmonization that is responsible for a national solution for management of metadata, coding system and terminology.
The institutions that are responsible for running the health registries will be reponsible for managing register-specific metadata and deliver metadata to the Health Data Programme.
Documentation of health registries, validation and quality control is closely linked to the administrative responsibility for the health registries, the Norwegian Institute of Public Health and the Norwegian Directorate of Health and the Cancer Registry, as well as the responsibility for making the data available for research. Long-term operational responsibility for this field is under debate as the Health Data Program and the Directorate for e-Health currently have a key role in the development of a Health Analysis Platform.
The work has been closely integrated with the core facility for Biostatistics and Data Analysis at the University of Bergen and will be continued.
Investments in the secure research infrastructures SAFE and TSD will be included as a small part of these much larger research infrastructures. Investments have been particularly important for health register research. Operational responsibilities of the main infrastructures lies within the University of Bergen and the University of Oslo.