TEHDAS policy forum discusses services expected from European Health Data Space
Representatives of ministries from 16 European countries discussed the national single information point and the services they would like to see emerging from the future European Health Data Space (EHDS). They emphasised the need to clarify the interpretation of data protection rules, build a robust infrastructure and improve national health data governance to enable the better use of health data.
TEHDAS hosted its second policy forum, 29 November, in collaboration with the Slovenian presidency of the Council of the EU. Representatives of the ministries of health, economy and research in EU member states and associated countries discussed the feasibility of national single information points and the potential services of the future European Health Data Space (EHDS).
The wider use of health data requires legal clarity on the interpretation of the General Data Protection Regulation, which currently varies from country to country. The participants spoke of the need to build infrastructure across the EU and to develop national health data governance frameworks.
The diversity of the health systems in the member states hinders data use. In countries where the healthcare sector and health data management are privatised and there is no legislation on the secondary use of health data, data sharing needs to be incentivised. Similarly in countries where governance is mostly in regional level, the establishment of a national single information point may be more difficult.
Most participants interpreted the national single information point as a gateway to information on the available health data and access procedures. They also described the information point as a primary interface to other member states or sectors requesting data. National single information points are similarly defined in the Commission’s Data Governance Act that covers data across sectors.
To feed the discussion on the user’s journey for the EHDS and its services, Juan González-García from the Aragon Health Sciences Institute, presented the user journey for cross-border health data sharing proposed by TEHDAS. The user journey refers to the journey of a research query, and the different phases that the query would go through, from the discoverability of data to the accessibility of the right data to its use and the subsequent results.
The participants agreed on the need to create a mechanism that would help in discovering the relevant health data. This could be done by creating a public metadata catalogue and an advisory service in each node. Nodes are organisations providing services for data access.
Some participants noted that there are important steps – data collection – needed before reaching health data discovery that are not included in the proposed user journey.
The meeting also discussed how to enable the national nodes to communicate with each other. It is important to define a consent model and train professionals and citizens to improve their knowledge of each step of the user journey.
Slovenia: ensure that health data is accessible, compatible and reusable
The forum opened with an address by Dr Franc Vindišar, State Secretary of the Ministry of Health of Slovenia. He highlighted the importance of building the EHDS and creating common practices for secondary use of health data in Europe:
“The benefits of the secondary use of health data include providing better healthcare services and personalised care for people thereby saving lives, increasing business opportunities and saving costs for societies. Therefore, it is important to ensure that health data is accessible, compatible and reusable.
Policy forums are organised by the TEHDAS joint action as a part of the work package responsible for outreach, engagement and sustainability. The first policy forum, earlier this year, set the scene for the EHDS and highlighted the importance of cross-sectoral data sharing.
“I want to thank the ministries for the lively debate and their valuable input in moulding the EHDS. The aim of these policy forums as well as the upcoming country visits is to engage member states and ensure national perspectives are heard”, said Petronille Bogaert, Head of Unit at Sciensano.
In 2022, the TEHDAS team will visit 12 European countries with the aim of collecting an overview of the state-of-play of the national health data management developments in relation to the EHDS.
The event was moderated by Neville Calleja, Director of Health Information and Research from the Maltese Ministry for Health. The online forum was attended by 60 designated participants from 16 European countries.
The next policy forum will be held in June 2022.