Project start date: 1/12/2023
Project duration: 36 months
Participating institutions:
- National Institute of Public Health (coordinator)
- Institute of Oncology Ljubljana, Slovenian Cancer Registry
- Statistical Office of the Republic of Slovenia
- Institute for Health Insurance
Data users, including researchers, policy makers, regulators and innovators, report a number of barriers to the cross-border exchange of health data. These are mostly due to different legal interpretations and data management practises in Europe. Due to the current barriers, health data is underutilised for secondary purposes such as research and policy making. As a result, this underutilisation reduces the benefits for all, such as innovation and the development of more effective medicines and treatments.
As part of the project, an infrastructure is being developed that is divided into four key digital business areas:
- building a metadata catalogue of health data sources,
- building a platform for a data access application,
- development of a secure processing environment,
- improving the quality of data and metadata.
All this will be connected to other countries and the European Commission through a cross-border portal linking the Slovenian Health Data Access Authority with the HealthData@EU infrastructure to enable cross-border workflows for the secondary use of electronic health data at EU level. The project is led by a consortium in which all major data holders in Slovenia are represented. This will enable higher quality products, better realisation of results and better dissemination of project results to the research community.
The SI-SUD project will have short-term, medium-term and long-term effects:
In the short term, the greatest benefit will come from data managers working closely together, creating metadata catalogues, working more transparently and taking advantage of the best practises of other data managers.
The medium-term effect of a successful pilot study and evaluation of the pilot projects will explain the role of the EHDS in Slovenia for the majority of stakeholders. The promotion of the project will also increase interest in the secondary use of data among researchers and other interested parties in Slovenia.
In the long term, a successful project will pave the way for a broader secondary use of data by researchers and industry. On the other hand, adequate dissemination of the project will increase confidence in the transparency and quality of the collected data and its utilisation.
