TEHDAS identifies user journey for cross-border health data sharing
Health data offers significant opportunities for research and decision making. Currently, it is underused compared to the potential that exists, especially in the European cross-border setting. To facilitate the debate about how health data could be used more efficiently, we have identified seven phases in the data lifecycle, from finding the right data to publishing the results of its use.
The recent report of the joint action Towards the European Health Data Space (TEHDAS) describes seven phases involved in a typical situation in which data is used. This so-called user journey starts from data discovery. This means searching for and finding the right type of data, followed by requesting permits to access it, collecting consents, if needed, and preparing the data for use. Finally, after data access provision, the data is put to use, and the results are duly published.
Our future work will analyse each stage in more detail and describe what technical services are needed in European Health Data Space in each one.
Main elements of European Health Data Space determined
The report also outlines five main elements – known as the architecture – of the European Health Data Space.
This architecture comprises of a network of federated nodes of organisations providing services for data access. These services are used by data consumers, organisations or individuals using data, such as public or private research organisations. The nodes are linked to several data providers, organisations responsible for maintaining data, such hospitals, that have generated data when delivering healthcare. These provide secure data processing environments. The nodes also provide services for data subjects, individuals whose data is being used, by requesting their consent for data processing (opt-in) or maintaining a registry of individuals who refuse data processing (opt-out), or providing information about how their data is used in research projects.
The report findings are based on three virtual workshops with the TEHDAS work package 7 advisory group. About 40 experts from across Europe have actively participated in discussions, interactive group work and by completing a questionnaire collecting opinions and perspectives on the cross-border secondary use of health data.
Work package 7 is continuing to examine the services provided by data hubs and the architecture of the European Health Data Space. A final concluding document will be published in autumn 2022.