Debate: European Health Data Space
Date: TUESDAY, 12 DECEMBER 2023
Speaker: Stella Kyriakides
Language: EN

I fully agree that health data could not be more sensitive. Our General Data Protection Regulation fully recognises this, and what I can assure you is that we will never lose sight of it. I also share the Parliament’s view that for this to be able to be really an important part of the health union, it has to have the full trust of the patients and citizens. Let me use some of the words that you have used in in this debate. You have spoken of this being a massive opportunity. You have spoken of patients and citizens needing to have control over their own data. You have spoken of the importance of interoperability. Sara Cerdas spoke of the importance as a major step in the European Health Union. I noted as well many of the comments. There was also a comment here from, I think it was MEP Metz, on giving hope to those patients with rare diseases. This, I think, is important. These are our concepts, our principles that are close to all our hearts. But because there is a possibility that citizens and patients are following this debate today, I want to address two issues. First of all, on the issue to do with primary use, because a great deal has been heard. On primary use, the citizen has full control of what data is shared. So they have the possibility to restrict the visibility of parts of their data, including to certain categories, for example, of health professionals. So you are able to indicate the health data access service if you don’t want your health data to be accessible via the health professional access service. You can do this either on a general basis for all of your data, or you can do it for part of your data. For example, I don’t want my new GP to know that I had a treatment for a mental health issue several years ago. That is provided in the proposal. Because there was a lot of discussion on opt-out and opt-in for secondary use, I want to take just half a minute and just really emphasise why we have taken this in the proposal as a Commission. We believe that opt-out would seriously hamper the usefulness of the European Health Data Space for researchers and innovators because, in order for secondary use to be important, as I said at the beginning, it needs to be representative. If there are relevant differences between those who choose to opt out and those who do not, this could affect the bias of research results, especially for minority groups. I trust that this will be a discussion that will be held tomorrow. For us, it’s important that we get the details right. Of course, it’s important that we have data protection and fully respect fundamental rights of citizens and of patients. But ultimately, I believe that together with this House, we can work together in building a strong European Health Data Space, a strong European Health Union. We need to be ambitious, and I very much look forward to the trilogue starting as soon as possible and being able to deliver jointly within this Parliament’s mandate. Once again, thank you for the very close collaboration. Thank you for the debate today and I look forward to the discussion tomorrow.