Developments Health-RI and U-Cloud
U-Cloud was launched in 2022 as a public and private partnership in which several regional and national parties work together to make data from citizens in the Utrecht region accessible for research, in the context of the national data infrastructure that is being set up by Health-RI in cooperation with the regions. It aims to become an infrastructure in which data is controlled and securely available and can be linked where necessary to answer specific questions; for example, the influence of greenery in the living environment on health or investigating the incidence of certain diseases per region. Privacy and the fact that data cannot be traced back to practices or individual patients will be the priority. U-Cloud supports making data FAIR (Findable, Accessible, Interoperable, and Reusable), whereby data becomes accessible for research that answers questions relevant to healthcare in a broader sense (broader than just HAG), but the source data of course does not change location or owner. This is part of the developments surrounding Health-RI; a National Growth Fund project to set up a health data infrastructure for the secondary (research) use of healthcare data. Through the Department of General Medicine and in consultation with them, we also aim to make the data of the Julius General Practitioners Network available to researchers via U-Cloud, after which researchers can submit a data request to use the data in the Network. This will of course be done in consultation with the general practice department, which will maintain relationships with the individual general practitioners and monitor the type of requests.
Current status of U-Cloud: We are currently working on the first developments surrounding U-Cloud. An appropriate form of governance is being considered to ensure accountability and participation. Sample applications are used to examine the IT infrastructure, the so-called building blocks, that must be developed to enable connections between different data sources in the region.
Status of connection of JHN to U-Cloud: An initial inventory has been made with the management of JHN to see whether it is possible to connect JHN to U-Cloud and what conditions are attached to this. At this time, the organizational structure surrounding U-Cloud will first be further developed, after which discussions will be resumed and an assessment will be made of what is needed to make JHN data findable for researchers in the region.
For any questions, ideas, or comments, please contact Monika Hollander and Dorien Zwart.