European Health Data Space

The EU has ambitious plans for data sharing. It is currently working on a European Health Data Space (EHDS): a secure and interoperable digital space for sharing and using health data. The EU hopes to reach an agreement on this in the first quarter of 2024. At the heart of the plan is that hospitals and other healthcare institutions will be required to make patient data available through the EHDS so that it can be accessed from any member state for care, research and policy. Remarkably, in the original version of the EHDS, patients had no say at all about such availability; under pressure from the European Parliament and others, they can now at least 'object' to the sharing of their data. 

Data protection in the Netherlands

In her presentation, Ploem stressed the importance of having as much say as possible and clear legislation anchoring it. Preferably, she argued, patients' say on what happens to their health data should be regulated in one central law.  

In her plea for control over one's own data, Ploem referred to its foundations: professional secrecy and the right to protection of informational privacy. She also pointed to the need for self-regulation.   

Finally, Ploem also raised the point that there can be no question of absolute control over one's own data. Of course, other values within society also need protection, such as that of generating new knowledge and insights within medicine. But nevertheless, institutions and healthcare providers have a 'duty of effort' to give patients as much say as possible within the frameworks of law and self-regulation.