Abstract

The Estonian Electronic Health Record (‘EEHR’) enables patients and healthcare professionals to share and use health data for treatment and health administration, but also caters to so-called secondary uses such as scientific research and development of health products – an approach in line with the EU draft regulation for a European Health Data Space of May 2022 (‘EHDS’). However, neither in the Estonian record nor in the EHDS patients have a say in the collection or storage of their data in electronic patient registers; the same is true for data retrieval for secondary use. This is in obvious contradiction to informational self-determination, which is exacerbated by indeterminate permissions and prohibitions.

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