Keys to consumer health data should lie more with consumers

EU countries have today agreed they would prefer their governments to take many of the important decisions surrounding access to consumers’ health data.

The objective of the European Health Data Space is to make national electronic health records interoperable and accessible to healthcare professionals across the EU. People’s health data would also be available to researchers, public authorities and companies in different formats and under certain conditions.

There are clear and worthy benefits to the European Health Data Space. At the same time BEUC’s survey this year showed that consumers are generally cautious about sharing their health  data through online health platforms and want to decide for themselves what data they share and with whom. It is therefore important to let consumers have as much of a say as possible in this new system.

Monique Goyens Director General of the European Consumer Organisation (BEUC), said:

“The reasons for the European Health Data Space are laudable and such a system should be encouraged, but not at any cost. Our survey results showed that consumers want to have a say on what happens with their data. It should be up to consumers to decide if their health data gets shared with third parties like researchers, and especially so when the data can end up being shared with companies.  That is important to build trust in the system.”