The creation of a European health data space (EDS) is progressing in small steps. The objective is to create a framework for sharing health data on a European scale. On October 3, 2022, the European Commission unveiled the five use cases selected to test the implementation of such a space. These use cases “will demonstrate the feasibility and potential impact of leveraging health data for public health, research, innovation and health care system improvement”Explain the Health Data Hub, which is piloting this first phase.
The creation of a European health data space
The EDS aims to meet three objectives : that European citizens have easy access to their data and that they can share it with health professionals – in particular thanks to the establishment of a European format for issuing documents and facilitating their interoperability; that healthcare professionals can improve their healthcare delivery through better sharing of patient information; that researchers, and industrialists under certain conditions, can access the data via a dedicated body that will guarantee confidentiality.
On the handle? The French Health Data Hub which was selected to lead a consortium of 16 partners from around ten European countries to build the first version of the future EDS. This consortium is responsible for connecting health data platforms – whether national infrastructures, European agencies or research infrastructures – in a network of ‘nodes’ and linking this network to services centers available at European level.
As a first step, it is necessary to assess the feasibility, the interest and the capacity to deploy such an infrastructure at EU level. Hence these first five use cases selected to study the feasibility and potential of reusing data from several European countries, and to study how to best create these nodes and these central services.
5 use cases
- The European Center for Disease Prevention and Control (ECDC) wishes to demonstrate the possibility of using the DHS network of data platforms to provide surveillance of antimicrobial resistance. The project will mobilize Finnish and Belgian data.
- The European Medicines Agency (EMA) wishes to identify the risks of bleeding disorders in patients with Covid-19. The project will mobilize Danish, Finnish, Croatian and French data as well as the Darwin Eu network.
- Sciensano wishes to compare the use of tests, hospitalizations and adherence to vaccination in the general population, in vulnerable sub-populations, and by socio-economic indicators. The project will mobilize Belgian, Danish, Croatian, Norwegian, Finnish, Hungarian and French data.
- Le Health Data Hub wishes to compare care pathways in different countries for cardio-metabolic diseases and predict trajectories through the use of artificial intelligence. The project will mobilize French, Finnish, Danish and Hungarian data.
- The Elixir Research Institute wishes to mobilize and link clinical and genomic data to answer research questions in colorectal cancer. The project will mobilize Belgian, Hungarian and Danish data.
The idea is to overcome the fragmentation of health data on a European scale, access to which is difficult even for research. By showing the advantages of such a project and by testing the first use cases, the consortium hopes to define how to set up such a European health area.