The Health Brief

Balancing patients' privacy and health data's potential

20 min · 5. juli 2023
episode Balancing patients' privacy and health data's potential cover

Beskrivelse

European Health Data Space (EHDS) focuses on the primary and secondary use of data. While the primary use of data is data used by citizens and healthcare professionals at the national and EU levels the secondary data is to be used by researchers, policy makers and pharma. The Commission's proposal does not include any say for patients regarding the secondary use of data, while Parliament, which is currently dealing with the proposal [https://www.euractiv.com/section/health-consumers/news/eu-parliament-solving-riddle-of-secondary-use-of-data-in-health-data-space/], is vowing for an opt-out option. In the meantime, there is a petition [https://act.wemove.eu/campaigns/medical-records?action=sign]circling calling for the empowerment of patients regarding the secondary use of their health records. About what concerns are being seen for the patients when it comes to reuse of the health data EURACTIV's Giedre Peseckyte is talking with Jan Penfrat, the senior policy advisor at the European digital rights association.

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episode Balancing patients' privacy and health data's potential cover

Balancing patients' privacy and health data's potential

European Health Data Space (EHDS) focuses on the primary and secondary use of data. While the primary use of data is data used by citizens and healthcare professionals at the national and EU levels the secondary data is to be used by researchers, policy makers and pharma. The Commission's proposal does not include any say for patients regarding the secondary use of data, while Parliament, which is currently dealing with the proposal [https://www.euractiv.com/section/health-consumers/news/eu-parliament-solving-riddle-of-secondary-use-of-data-in-health-data-space/], is vowing for an opt-out option. In the meantime, there is a petition [https://act.wemove.eu/campaigns/medical-records?action=sign]circling calling for the empowerment of patients regarding the secondary use of their health records. About what concerns are being seen for the patients when it comes to reuse of the health data EURACTIV's Giedre Peseckyte is talking with Jan Penfrat, the senior policy advisor at the European digital rights association.

5. juli 202320 min