The establishment of regional nodes is one of the central components of the national health research infrastructure.
In short, Health-RI will enable data exchange by using a so-called Hub and Nodes model. In 2021, eight regional Nodes were set up and operational; region Utrecht, region Rotterdam, region Groningen, region Limburg, region Amsterdam, region Nijmegen, region Leiden and region Eindhoven. The central Hub supports the Nodes in various actions such as: making data FAIR, providing services to researchers, and ensuring the connection to many parties both on a national and an international level.
Central to the network is the data catalog that is filled with metadata from the Nodes, among others, with the data in many cases remaining local. Naturally, this is also backed up by a fully equipped governance structure, including a legal basis and authorization to actually release the data to a researcher. The health infrastructure is broader than just the Nodes, but the Nodes that started in 2021 are important pillars and precursors in this process.
Agreements with the eight Nodes started in the beginning of 2021. The Nodes are governed through the Heads of Node, together with the tactical representatives and in close cooperation with the Health-RI Hub. Within the Nodes, the focus is on four themes; namely (1) Ethical, Legal, and Societal Issues (ELSI), (2) Architecture, (3) FAIR Data Implementation, and (4) Biobanks and Collections. Moreover, each Node is working on a one-stop shop for services for these four themes. Regional coordinators are active within all Nodes for the themes and the one-stop shop function.
Professor of Clinical Data Science at Maastricht University | Maastricht UMC+ | Maastro Clinic
