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Individuals favour data sharing and use if benefits are clear

European citizens support greater transparency and guidance on how their health data is used. The better informed they are, the more likely they are to favour its use.

The wider use of health data can benefit public health and improve healthcare in many ways, such as by aiding research to produce more effective medicines. The recent report of the joint action Towards the European Health Data Space (TEHDAS) examines public perceptions of and engagement with the secondary use and sharing of health data in Europe.

Based on a literature review, the report highlights a consensus within the academic community that individuals feel relatively uninformed about the use of their health data and want greater transparency and information on the palpable benefits of data use. The better individuals are informed, the more they tend to favour the use and sharing of their health data.

Citizens’ role in future European Health Data Space undetermined

The report also underlines ethical, legal and social issues raised by the academic community on public involvement in sharing and using health data.

EU legislation and strategies increasingly acknowledge citizens’ role in governing health data, an example being the General Data Protection Regulation (GDPR), which protects the personal data of EU citizens.

However, there is no agreement on the extent to which people could be directly or indirectly involved and how. The review also points out that there is relatively little public consultation on what their role, if any, would be in the secondary use and sharing of their health data.

These results are based on a literature review of 71 scientific articles. TEHDAS recognises that the review is non-exhaustive and has called for further research on the topic.

In December, TEHDAS will launch an online citizen consultation that aims to contribute to a better understanding of public expectations concerning the secondary use and sharing of health data and how people see their involvement in it.

TEHDAS work package 8 will deliver recommendations to the Commission on how to raise awareness and engage citizens in the European Health Data Space in early 2023.

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