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The European Health Data Space agreed today by the EU institutions is a step forward to improve healthcare. However, the institutions should have given more choice to people to decide for themselves who their data is shared with, and for what purpose.
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EU countries have today agreed they would prefer their governments to take many of the important decisions surrounding access to consumers’ health data.
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A survey across eight European countries shows that consumers are more cautious about sharing their health data than legislation currently under discussion at EU level proposes. The findings underline that EU legislators urgently need to better reflect people’s preferences in the European Health Data Space Regulation which is already under discussion by the EU institutions. This is essential for people to feel confident about sharing their health data to improve healthcare provision and make their data available for research and public health purposes.