Press release | MEP says balance struck between privacy and representation in health data

Brussels, 12 October 2023 – The rapporteur on the European Health Data Space (EHDS) believes that the right balance has been achieved between privacy and representation in health data by choosing the opt-out method. Tomislav Sokol, Member of the European Parliament (MEP), was speaking at the European Health Summit organised by Friends of Europe, where he also argued that an opt-in method would render the data unusable.  

As Sokol explained, the “elephant in the room” is the secondary use of health data. Whereas the primary use is “use of data by healthcare providers”, secondary use allows actors such as pharma companies or research universities to request a data permit to use this data for innovation or research purposes. “Of course, the big thing that is controversial in secondary use of data is who can use this data and for which purposes and what should be the patient’s role there”, said the MEP.  

However, Sokol argued, a balance should be struck between the patient’s right to privacy and the need to have unbiased and representative datasets. “This is why me, as the rapporteur for this file, proposed the so-called opt-out. The idea is that those patients who do not want their data to be part of the datasets used for research can decide.” 

“If you would go for an opt-in or consent–based system, whereby every patient would have to give consent for each dataset where his data is used, this would not work. Then we would not have enough data and this data would be useless”, argued Sokol.  

In an event where health as an investment was discussed at length, whether by addressing the potential of artificial intelligence or addressing it as a management problem, Anca Toma, Executive Director of the European Patients’ Forum, brought in a different perspective. “Let’s talk about health in economic terms. Does that seem right? Is health about economics? Or is it about human rights?”  

“If we accept the economic view [of health], then patients are shareholders in healthcare and expect to be involved in decision making.” 

– ENDS – 

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