TEHDAS has brought dialogue, clarity and collaboration to developing the European health data space
The European health data space will change the way health data is used in the EU and therefore has direct implications for European countries and EU-funded projects. TEHDAS has held eight forums for stakeholders to prepare for the regulation and bring valuable insights to TEHDAS work.
A new report of the joint action Towards the European Health Data Space (TEHDAS) presents the key discussion points of TEHDAS policy and project forums that aimed to initiate dialogue with European policymakers and projects on the upcoming European health data space (EHDS). The online forums were held in 2021–2022. The policy forum gathered on average over 60 participants from 20 countries and the project forum gathered on average over 130 participants from different European projects.
Involving European ministries with EHDS
Health is both impacted by and has a strong impact on a variety of policies and government ministries. By hosting policy forums for European ministries of health, finance and research TEHDAS provided an arena for cross-sectoral and cross-border discussion, to ensure national perspectives were reflected in the Commission’s proposal on the EHDS, allow ministry representatives to learn from other countries’ experiences, and to help the member states to prepare for regulation.
The discussions included what countries need to create the EHDS for the secondary use of health data, the financial sustainability of EHDS and the services expected from the EHDS. Countries are willing to join the EHDS, but more investments are needed for implementation.
A recent TEHDAS report found that member states’ readiness to benefit from the EHDS regulation varies widely. The inputs from the policy forum participants echoed the findings of the country visits. Whilst some countries already have well-developed systems for the secondary use of health data, there may be issues in adapting existing arrangements to match the requirements of the EHDS.
As EU member states are preparing to implement the European health data space and are considering what measures will be needed and how to finance them, TEHDAS will deliver recommendations on EHDS sustainability in June 2023.
The policy forum participants reported that the forums have helped the member states to understand the EHDS proposal and TEHDAS’ work in support of it and enabled discussion between and within countries on the regulation. They stressed that they found these informal settings for discussions especially useful.
Connecting European health data projects
By hosting project forums, TEHDAS has aimed to build dialogue and collaboration between different EU projects working on health data sharing and the secondary use of health data, to ensure TEHDAS builds on existing work and receives valuable feedback to its results. The discussions included a deep dive into the EHDS proposal, how the projects’ work might adapt in light of it and what challenges they envisage with the EHDS.
In the project forums, EU-funded projects reported that they have struggled with different regulations on health data use and different interpretations of the EU’s personal data regulations (GDPR). The projects expect that the EHDS regulation will overcome these challenges. They also noted that novel technical solutions can be used to solve complex problems, for example safe spaces that allow data to be analysed without moving it from its source.
Stakeholder engagement to be continued
Throughout the project TEHDAS prioritised stakeholder engagement by hosting forums and other events as well as attending numerous speaking engagements across Europe.
“Based on the positive feedback from participants, we clearly see that collaboration needs to continue after TEHDAS. Building networks, increasing awareness and facilitating dialogue between various stakeholders are key to building a sustainable EHDS”, says Petronille Bogaert from Sciensano, the TEHDAS partner leading the work on outreach and engagement.
The forums are likely to be continued by a joint action starting in 2024. In the meantime, discussions are ongoing between European health projects to organise a policy forum at the end of 2023.
The report has been approved by the project steering group. The European Commission gives final approval to all joint action’s deliverables.