European health projects meet to discuss European health data space proposal
European health data projects welcome the European health data space proposal and call for clear data governance.
The third project forum of the TEHDAS joint action, held online 22 June, brought together over 120 European health data specialists from 23 countries and representing a wide range of projects and initiatives. The focus was on the newly published European Commission’s proposal on the European health data space (EHDS), how the projects’ work might adapt in light of it, and the challenges they anticipate.
In parallel sessions, participants discussed in detail data governance, data quality, the infrastructure for sharing data, and citizen engagement. The participants highlighted the need for clarifying the responsibilities of the health data access bodies to be set up in the member states and the importance of ensuring accessibility to secure processing environments.
Data governance needs to be built
In the discussion on data governance, participants identified a need to clarify the roles and responsibilities of the health data access bodies. Under the Commission’s proposal, each member state will create one or more health data access bodies to facilitate access to electronic health-related data. The discussion revealed that work is still in progress to establish these bodies in many countries.
Participants noted that ensuring data flows from healthcare providers to health data access bodies is an extensive undertaking. It is important to start and make progress step by step.
The Commission has also proposed setting up a European Health Data Space Board (EHDS Board), which will be responsible for facilitating cooperation and exchange of information among member states. Participants called for a clarification of the relationship between the EHDS Board and existing governance bodies, such as the European Data Protection Board.
Accessible infrastructure for cross-border data sharing
The discussion on data sharing infrastructure focused on secure processing environments for health data, and particularly on standardising these environments to make them easy to use for research.
Participants supported the idea that the European Commission would provide a central secure processing environment as not all member states will be able to create their own. They also called for involving healthcare providers in the discussion.
The discussion on data quality focused on the data quality and utility labels put forward in the EHDS proposal and the extent of the data to be included in them. A data quality and utility label for datasets would inform data users about the quality and utility characteristics of a dataset and enable them to choose the datasets that best fit their needs. Most participants preferred a two-step model where a self-assessment would first be performed by the data holder, followed by a third-party evaluation.
Citizen’s role in health data sharing
The group discussed the importance of engaging the public in data sharing and implementing mechanisms, such as an electronic portal, that would allow individuals to control how their data is used. On data altruism, which involves individuals and organisations making health data voluntarily available in the public interest, the group noted that it is important to think about what it means to citizens, as that might differ from what it means to institutions or those using data.
The participants felt that the consent models used in different countries could interfere with data interoperability and called for a common framework for the member states.
European initiatives provided feedback on how the EHDS proposal feeds into their work
Participants of four projects explained their work and how it could fit into the implementation of the EHDS.
Jan-Willem Boiten from Health-RI in the Netherlands noted that primary and secondary use of health data are viewed as two different worlds, which is seen as a missed opportunity by Health-RI. Health-RI and the EHDS proposal have a similar design for data sharing, and Health-RI’s activities could be re-used in the local implementation of the EHDS in the Netherlands.
Hille Hinsberg from Innovation Networks for Active and Healthy Ageing (In-4-AHA) presented the data governance guidelines developed by the project. She noted that service providers need guidelines on data quality, but they also need advice on how to put them into practice, and she highlighted the importance of benefitting from responsible data sharing practices being implemented by the industry.
Gozde Susuglu from Data Saves Lives spoke from the patients’ perspective on how patients should be involved from the outset in the development of the EHDS. Data Saves Lives aims to raise public awareness and understanding on the use of health data. She noted that to build trust it is important to clarify the complex concepts in the secondary use of health data. “We need to lift the curtain from in front of the whole concept of health data.”
Sari Sarlio-Siintola representing the SHAPES project expressed the need for clarifications of the proposal on who can be considered a data holder, what the obligations are for wellness applications, and what the connection is between pan-European solutions and national data access bodies. The SHAPES project aims to provide a pan-European platform to facilitate health and active ageing across Europe.
“The presentations we heard today strengthen the notion that many projects are doing similar things and we can learn from each other. It is exciting to see how projects are already interacting and cooperating. Through this collaboration we can help make the European health data space a success”, said Linda Abboud, Sciensano, the TEHDAS partner responsible for outreach and engagement.
The forum also enabled the TEHDAS work package leaders to present their attainments at the half-way point of the joint action and identify synergies with other projects. The results of the discussions will be included in further TEHDAS work.
The discussion will continue in the last project forum, which takes place in October 2022.