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Aims and objectives
The aim of the Digital Health and Data Network (DHDN) is to support other working groups of the European University Hospital Alliance (EUHA) in achieving their goals, to promote shared learning and exchange of experience in the field of Digital Health, Data Management and Strategy (e.g. European Health Data Evidence Network (EHDEN), International Patient Summary (IPS)) and to represent the interests of EUHA - members on a European level on topics related to Digital Health and Health Data.
Members of the network are experts in Data Science, IT, Research, Innovations and Management such as CMIOs, CDOs, CCIOs. Besides consulting and supporting EUHA projects, a special focus of the network is the design of the European Health Data Space. The EUHA DHDN is an advisory stakeholder in the Joint Action Towards the European Health Data Space (TEHDAS) and develops together with its members positions and proposals on the key features of the European Health Data Space (EHDS).
In a joint position paper, EUHA members have summarized their recommendations for the implementation of the European Health Data Space.
What is the European Health Data Space?
The European Commission launched the so-called European Health Data Space (EHDS) at the beginning of May 2022. This is a data space within the European Union that makes it possible to use health data throughout Europe for the direct care of patients, but also for research and for shaping health policy. The overall aim is better access to healthcare for all European citizens.
No transparent citizens - each individual has control over his/her data
The control over their own data lies with the citizens of the member states. They have the opportunity to add information, correct incorrect information, restrict access and even find out how and why the data is being used. Access to data is only granted to those who can demonstrate that the requested data will be used for pre-defined purposes in closed, secure environments and without revealing the identity of the individual.
What are the challenges?
In addition to the regulations on data protection (based on the European General Data Protection Regulation), a major hurdle is the interoperability of data, which is still largely lacking today: in each member state, data must be recorded according to the same schemes and in the same formats so that data from a member state such as France can also be used in Germany or all affiliated countries. The member states are responsible for ensuring this interoperability. They must ensure that, for example, electronic patient records, medication data, electronic prescriptions, images and laboratory results are issued in a common European format.
What are the concrete improvements for citizens?
Improvements can be expected in three relevant areas:
- uniform infrastructure and technology: this will make it possible to provide important care services throughout Europe in the future. For example, citizens will be able to provide their important data to local doctors while on holiday, and to fill their electronic prescriptions at any pharmacy within the EU borders.
- interoperability and high data quality: health data can be exchanged and used across countries on a secure basis and without loss of quality, especially without time-consuming reworking or translations. This improves both medical care in individual cases and research.
- Governance: National health systems are not yet able to cooperate efficiently - which proved to be a hindrance in the development of a uniform strategy in the context of the COVID pandemic - and drug development would also be even faster if data were collected and used uniformly.
What happens next?
All member states must designate authorities (and some have already done so) to ensure that the conditions for the EHDS are coordinated and created and that the rights of citizens are respected. These authorities are also obliged to participate in the concrete development of the cross-border digital infrastructure and to support patients in using the EHDS. The first solutions are currently being developed in pilot projects. The goal is to have created the basis for the Single European Health Data Space by 2025.
How is the DHDN involved in the EHDS?
The DHDN has successfully applied to the EU-funded project TEHDAS (Towards the European Health Data Space) as a so-called stakeholder for participation in two working groups of this project led by the Finnish SITRA. DHDN members regularly participate and contribute to the workshops of these working groups. In addition, the DHDN is looking into making the International Patient Summary (IPS) usable for the EUHA. The background here is that the electronic patient summary file is to be made usable for the EHDS as one of the first interoperable structured documents. This is based on the structures of the IPS. In Germany, the first version of the electronic patient summary file was specified in June 2022 and can thus be implemented. In the first stage of development, it contains above all an internationally comprehensible emergency data set and can thus already contribute significantly to better care.