The Estonian Electronic Health Record – a Prototype for Data governance in the European Health Data Space? journal article Michael Denga, Thomas Hoffmann European Health & Pharmaceutical Law Review, Volume 7 (2023), Issue 1, Page 5 - 15 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.
Tomato, Potato: When the Detail does Matter - The EU Institution's Understanding of Real World Data Kaat Van Delm