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   EDRi (edri@eupolicy.social)'s status on Wednesday, 24-Jan-2024 18:38:12 JST EDRi

   We're kicking off #PrivacyCamp24 now, watch HERE: https://privacycamp.eu/

   Are you ready to ⚡️ reveal, rethink and change the systems ⚡️ ?

   ✅ digital systems of exclusion
   ✅ #HealthData & patients' rights
   ✅ #Privacy is big business
   ✅ extractivist #tech solutions for the #ClimateCrisis

   Share your thoughts with us in this thread!

   • Embed this notice
     Walter van Holst (whvholst@eupolicy.social)'s status on Wednesday, 24-Jan-2024 18:38:09 JST Walter van Holst

     in reply to

     • Jan Penfrat

     @ilumium Amazingly enough we're three speakers in and several elephants in the room remain unmentioned:

     * medical secrecy law as a body of law separate from data protection law
     * data quality and semantics remaining an unsolved problem and tied closely to regulation of medical healthcare and not data protection law

     This panel appears to have swallowed the argument this is solely a data protection issue. It is not.

   • Embed this notice
     Jan Penfrat (ilumium@eupolicy.social)'s status on Wednesday, 24-Jan-2024 18:38:10 JST Jan Penfrat

     in reply to

     Looking forward to a deep-dive discussion at #PrivacyCamp24 comparing #healthdata regimes in the #EU and #UK and how (and if at all) they protect #patients' rights.

     #EHDS #NHS #privacy #DataProtection

     pettter repeated this.
   • Embed this notice
     Jan Penfrat (ilumium@eupolicy.social)'s status on Wednesday, 24-Jan-2024 18:44:44 JST Jan Penfrat

     in reply to

     Interesting how in #England, only very few patients actually use their opt-out right for secondary medical data use.

     Reasons according to Nicola Hamilton on the #PrivacyCamp24 panel: People don't know about their right. And defaults matter.

     A consent requirement for secondary use in the #EHDS would have been so much fairer. 🤷

   • Embed this notice
     Jan Penfrat (ilumium@eupolicy.social)'s status on Wednesday, 24-Jan-2024 18:44:45 JST Jan Penfrat

     in reply to

     Of course #KULeuven clinical #pharmacology researcher Teodora Lalova-Spinks makes clear from the start that primary and secondary use of medical records under the proposed #EHDS is not the same regarding #privacy.

     #PrivacyCamp24

     Tokyo Outsider (337ppm) repeated this.