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 two+ years now. Following its 2019 EHTEL Thought Leaders Symposium, the European Health Data Space, health data ecosystems, and citizen-centric data-sharing were already also on the agenda.
Read here about what EHTEL achieved in 2021 and especially 2022. 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 the most recent, and upcoming, progress on the European Health Data Space.
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. They 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.
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 will hold a first webinar on data-sharing that is citizen-centric. Not only will the focus be on citizens’ (patients’) data, but also citizens/patients will be intensively involved in deciding who can collect that data, and when and how.
In the second half of 2022, EHTEL wants to zoom in on challenges to data governance.
Other 2022 webinars/meetings on the EHTEL agenda are being 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 will cast further light on how European legislation will support the general convergence around citizen-centric data sharing, especially in the fields of health and care.
As a result of these initiatives in 2021 and the first half of 2022, 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 driven by its members. EHTEL is really pleased to read the content of the proposed upcoming European Health Data Space Act, released on 3 May 2022. Watch this space!
Close working relations with proactive citizen-centred European initiatives
EHTEL 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.