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EHTEL’s work on the European Health Data Space and citizen-centricity

The European Health Data Space and citizen-centricity have been on EHTEL’s horizon for around five years now. Following its 2019 EHTEL Thought Leaders Symposium, the European Health Data Space, health data ecosystems, and citizen-centric data-sharing were already on the agenda.

Read here about what EHTEL achieved in 20232022, and 2021 . These kinds of activities help EHTEL members keep their fingers on the pulse of the latest European developments in digital health. They especially help in following recent, and upcoming, progress on the European Health Data Space.


2023: Stakeholder engagement in the development of the European Health Data Space

In 2023, brought to the fore its role as a multi-stakeholder platform and its involvement in the digital health ecosystem. It did this in three ways: through its annual work programme; its growing involvement in wider coalitions and alliances; and its end-of-year Symposium. All these elements helped to expand options for stakeholder engagement in the European Health Data Space.
EHTEL's Imagining 2029 work programme in 2023: One of EHTEL's three tracks in its 2023 work programme deep dove into the European Health Data Space. It explored governance and management practices, especially regarding medicinal products and the secondary use of data. Several pertinent topics re-emerged in EHTEL's 2023 Symposium, also with a focus on hybrid models for health and (social) care - where the primary use of health and care data play a distinct role for citizens for patients. 
EHTEL contributed to several European alliances and partnerships: EHTEL especially endorsed and contributed to the work of the European Health Data Space joint coalition. Particularly during 2023, through its joint consensus statements, this coalition provided insights to European institutions and policy-makers on potential directions for the European Health Data Space. EHTEL often emphasised the role to be played by the wide range of stakeholders needing to be involved in the data space implementation. Many of EHTEL's own members are already involved in the implementation of good practices relevant to the data space.
EHTEL's 2023 Symposium: In December 2023, the Symposium showed just how important collaboration is to digital health implementation. There clearly is a need for the members of Europe's rich and wide-ranging digital health ecosystem to be engaged in the implementation of the European Health Data Space. Many of the Symposium topics were relevant to the future of the data space, especially from the viewpoint of citizens and patients.  Examples included the primary and secondary uses of data, and the possibilities offered by artificial intelligence

2022 focus on citizens’ access to health and care data

In 2022, in the context of its Imagining 2029 work programme – in its work on innovation – EHTEL held a webinar on data-sharing that is citizen-centric. Not only was the focus on citizens’ (patients’) data, but also citizens/patients were be intensively involved in deciding who can collect that data, and when and how.

In the second half of 2022, EHTEL zoomed in on challenges to data governance.

Other 2022 webinars/meetings on the EHTEL agenda were held on semantic aspects of data interoperability and how to enable health data-oriented architectures and processes. The first was on 25 April 2022.

All these webinars cast further light on how future European legislation will support the general convergence around citizen-centric data sharing, especially in the fields of health and care.

2021: Advances around data, digital, and the European Health Data Space

In 2021, EHTEL especially concentrated on work around data, digital, and the future European Health Data Space. Activities were covered in EHTEL’s Imagining 2029 work programme, contributions to European consultations, and – at the end of the year – in EHTEL’s annual Symposium.  

EHTEL’s Imagining 2029 work programme in 2021: EHTEL’s programme of activities in 2021 was intensively focused on European health data, health data ecosystems, and citizens’ health data sharing. EHTEL drew on the content in a number of events in its Imagining 2029 work programme. The events helped EHTEL to formulate its position, and to provide concrete feedback to several European consultations on these topics.

Contributions to European consultations: On several occasions throughout 2021 – including the months of January, February, and July – EHTEL, together with its members, reported publicly on its position vis-à-vis the European data strategy and the European Health Data Space. Early in 2021, EHTEL responded to the European Union’s consultation on the data space, with a specific focus on citizens’ access to health data. EHTEL’s key statements related to taking a positive position on a citizen-centred approach based on the use of mobile phones. The association expressed a belief in trusted health data ecosystems; the use of platforms and data repositories; reliance on trusted third parties; and the development of appropriate guidelines e.g., on data portability and data re-use – which can often be based on the constructive outcomes either of national programmes, located in Europe, or the outcomes of European projects.

EHTEL’s Symposium content: In December 2021, EHTEL outlined the positioning of its approach to citizens’ access to their health data during its annual Symposium. The association’s orientation was on dynamic consent, which acts as one form of trust enforcement mechanism. It was already clear that, in relation to health data, important future critical players will include data intermediaries like data cooperatives. EHTEL showed that there are especially interesting examples of data intermediaries functioning in European Member States like the Netherlands. They also exist in countries close to but outside the European Union, like Norway and Switzerland. The pertinent health data covered includes genomic and genetic data.

Today, data intermediaries are needed because of a general lack of interoperability and data governance. This observation applies to all sorts of data domains and, in particular, to healthcare.

As a result of these initiatives throughout the three-year time-period of 2021-2023, EHTEL has expressed its members’ and community views, on directions on the need for citizens’ access to and exchange of data for healthcare , especially in the context of the European Health Data Space. It has also drawn on interesting examples and initiatives which have been driven by its members. EHTEL continues to be pleased to read the contents of the proposed Regulation on the European Health Data Space. The association especially anticipates playing a role in the practical implementation of such a space in the future. Many of EHTEL's members are already playing a concrete role in applying data-space related initiatives. 


Close working relations with proactive citizen-centred European initiatives

FinlandEHTEL has especially benefitted from working closely with Finland’s innovation fund SITRA and a large-scale pilot called InteropEHRate, coordinated by the Italian technology firm, Engineering.

With SITRA, the Finnish innovation fund, EHTEL has worked to raise awareness on the notion of the fair data economy. With InteropEHRate, EHTEL has developed the concept of a citizen-centric health data sharing approach that complements a hospital-centric data-sharing approach: a White Paper details this concept. Overall, the InteropEHRate project aims to put people in full control of their health data on their mobile devices.




SITRA is Finland’s innovation fund. Over the past 18 months, EHTEL has benefitted considerably from its involvement in a Joint Action, coordinated by SITRA, called Towards a European Health Data Space (TeHDAS). The focus of the joint action has been on health-related data governance, interoperability, data quality, infrastructures, and citizens’ empowerment. Over the last 2-3 years, SITRA has kindly supported a number of EHTEL-organised conference sessions and webinars that have focused on data-sharing, data access, and the fair data economy. Three examples are its 2019 annual Symposium, 2020 Symposium, and its 2021 Symposium.


InteropEHRate has similarly sponsored and supported various EHTEL-organised activities and events. Several examples relate to the integration of mobile health data in the health service value chain, and the role of health data intermediaries. Due to end in summer 2022, the InteropEHRate project has worked intensively over its three-year time-horizon to focus on (citizen-centred) data exchange. Concentrating on the role that can be played by mobile phones, it has developed protocols that assist citizens to share their health data for purposes of larger-scale health research for the benefit of other citizens and society as a whole.



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