Powered by the xShare project
Three core actions are underway in the xShare project’s work on data sets. They are: the project’s close liaison with the TeHDAS2 joint action; its plea for better links between different kinds of data; and its examination of why a “only once” approach to data works. It is crucial that the uses of two types of health data, primary and secondary, are made to work together.
Working together with TeHDAS2 on data portals
The standardisation landscape is still 'scattered'. Connections are now only just emerging among the standards used in the clinical, research and public health ecosystems.
In terms of the secondary use of health data, several articles in the newly adopted Electronic Health Data Space (EHDS) regulation pave the way for public health datasets to surface. The EHDS will make them findable through metadata catalogues, thereby enhancing data discovery.
Key to this approach is HealthDCAT-AP. HealthDCAT-AP is a health-specific extension of DCAT-AP - an Application profile for data portals in Europe-that enhances the discovery and accessibility of health data. It includes electronic health records, while prioritising privacy, security, and responsible data sharing. During 2024, xShare organised a dedicated internal webinar to make this important aspect of the EHDS regulation clear to the whole xShare value chain.
xShare is also in close contact with TEHDAS2, a Joint Action which will finetune and validate the HealthDCAT-AP in the broader health community. To know more about HealthDCAT-AP, access this introduction.
Meanwhile, TEHDAS2 has launched a public consultation on four important guidelines and specifications for EHDS2. Contributions are accepted till February 28, 2025.
Making a plea for better links between data
During 2024, at several major international events, xShare representatives who work on datasets have advocated for the need for a better link between the primary, and secondary, use of health data, referred to here as ‘EHDS1’ and ‘EHDS2’. For example, xShare was featured in the European Public Health Conference held in Porto, Portugal on 17-18 November 2024.
On 4 December 2024, xShare featured at the EHTEL annual symposium, a dedicated session which included several xShare partners as speakers. The session focused on how the emergence of citizen-centric data ecosystems will complement traditional clinician-centric relationships. This session offered the possibility to reflect on the implications of this paradigm shift. The session presentations are now available. Session videos will also soon be available to watch.
Examining why a “only once” approach to data works
“Only once” means that a maximum re-use of data produced in the context of continuity of care can be guaranteed to feed datasets created for secondary use.
Documentation has now been gathered by xShare on a number of implemented “only once” best practices in four European Union (EU) Member States. The four countries selected were Belgium, Denmark, Finland, and Spain (the region of Valencia). These four experiences have enabled the identification of lessons learned which might help guide other EU Member States. The public reports are not yet available, but some important learnings from them can already be shared.
How does success happen? Fully integrated infrastructures have a very high potential, but they do not resolve the challenges of ensuring data quality and compliance to higher semantic standards. Initiatives with more limited ambitions – yet with a clearer data producer buy-in – have been successful: this, however, does not guarantee scalability (even when the level of constraints on data producers are modified). Initiatives which impose a higher level of constraints on data providers – although very promising – face some resistance from healthcare providers. This is especially the case when multiple parallel data collection systems remain operational. Finally, sometimes industry can play a pivotal role in better integrating requirements for both primary and secondary use of data.
xShare representatives will attend EFMI’s 35th Medical Informatics Europe Conference to be held in Glasgow, Scotland, on 19-21 May 2025. It is anticipated that xShare will organise a workshop focusing on “only once” best practices there.
Looking ahead, after a busy first 12 months of activity, it is clear that not only xShare as a whole, but also its specific work on data sets, will continue energetically throughout 2025.
