SENASH
There is an ongoing work at EU level to ensure that health data can be shared efficiently and securely in a European health data space regulated by the EHDS Regulation. Through SENASH – Sweden National services for Access to Swedish Health data, we are preparing Sweden's capability to make health data available for secondary use both within and between EU member states.
Easier to find and access health data
SENASH is an EU-funded project where five Swedish governmental authorities collaborate to create a national system for access to Swedish electronic health data for secondary use. The authorities involved in the project are: The Swedish eHealth Agency, which leads and coordinates the project, the Public Health Agency of Sweden, the National Board of Health and Welfare, Statistics Sweden and the Swedish Research Council.
Better collaboration between authorities responsible for health data in the national context will facilitate the secondary use of data for research, innovation, regulatory and public policy across the EU.
The goal is to make it easier to find and access Swedish health data at the national level. During the project, two systems will be developed in pilot versions:
- A national metadata catalogue that improves the findability of health.
- A centralized system that facilitates data access applications and data requests for health data to multiple dataholders.
Preparing for the European Health Data Space
The European Commission is aiming at establishing a common infrastructure, a European Health Data Space to access health data across the Union. The goal of the European Health Data Space is to ensure that high-quality data can be shared efficiently and securely within and between EU Member States.
The European Health Data Space is regulated in the EHDS Regulation. When the regulation enters into force, a coordinating governmental authority will be appointed as the national node for Sweden and will function as the national contact point to the HealthData@EU infrastructure of the EHDS for secondary use. It will be responsible for making health data available across national borders for secondary use and ensuring compatibility with the EU's digital infrastructure for cross-border data sharing.
This national contact point may be the coordinator, known also as a Health Data Access Body (HDAB). One or more HDABs will also be part of the national infrastructure that needs to be established in each member state.
Feasibility study and pilots as a method
In the SENASH project, a feasibility study is being carried out to analyse the Swedish national context and the challenges posed by the EHDS Regulation regarding the secondary use of health data.
The feasibility study will describe the current state for requesting health data from national registers at governmental agencies and describe existing processes, tools and experiences at the national level. Pain points in the process will also be identified that can be addressed with the help of a national metadata catalogue and a centralized system fo requesting health data.
The pilot versions of the metadata catalogue and data access application system being developed by the project can be deployed by a future Swedish HDAB and could also be used by data holders and users of health data in Sweden.
Cooperation model
The collaboration between five governmental agencies in the SENASH project enhances preparedness and knowledge regarding how EHDS and the establishment of a national infrastructure for secondary use of health data can influence the responsibilities of various stakeholders in Sweden.
The project runs from February 2024 to January 2027.
The project comprises eight work packages that are described under project organization.
The EU4Health Work Programme co-finances the project, which has a total budget of SEK 28 million.
Project organization
The SENASH project is consists of eight work packages and includes participants from the five governmental authorities. The project also includes a Steering Board and an Advisory Board with representatives from the health data sector.
Work packages:
- Work Package 1 Project Coordination
- Work package 2 Communication and Dissemination
- Work package 3 Evaluation
- Work package 4 Sustainability and collaboration
- Work package 5 Analysis and design
- Work package 6 Development and testing of Data Access Application System
- Work Package 7 Development and testing of National Dataset Catalogue for health data
- Work package 8: Pilot of Data Access Application System and National Dataset Catalogue
