European Parliament agrees position on the European Health Data Space
20 December 2023
On Wednesday 13 December, Members of the European Parliament adopted their position on creating a European Health Data Space. The European Health Data Space aims to both (a) empower citizens to control their personal healthcare data and (b) facilitate secure sharing of health for research and altruistic (i.e. not-for-profit) purposes. A full plenary meeting of the European Parliament adopted the report, which will serve as Parliament’s negotiating mandate in talks with Council on the final form of the legislation. The report was passed with 516 votes in favour, 95 against, and 20 abstentions.
In particular, the European Parliament is seeking amendments to the legal text proposed by the European Commission, including to provide an opt-out facility for individuals not wishing their data to be shared for secondary (research) use. The Parliament has also inserted an opt-in clause, specifying that explicit consent must be sought from patients to share sensitive health data, such as genetic data, for secondary (research) purposes.
The European Cancer Organisation, along with many other scientific organisations, has cautioned on the risk of creating complicated consent provisions that might jeopardise the smooth functioning and achievement of the legislation’s purposes, with the risks, for example, of new data biases being introduced. See more here.
The European Cancer Organisation recommends, rather, that such issues, and many others, that may occur in the functioning of the European Health Data Space, should be subject to strong oversight by the European Health Data Space Board, including healthcare professional and patient representatives as equal and voting members.
See the suggested amendments of the European Cancer Organisation here.
You can read further information about ECO’s policy positioning on digital health in cancer in the relevant chapter of the Time To Accelerate: Together Against Cancer Manifesto here. We invite your endorsement!
For further information about this topic, and to connect to ECO's work on Digital Health, please contact Silvia Romeo at silvia.romeo@europeancancer.org.
