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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.

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.

Hm, Benoit Marchal from the #PicAps Association claims that when 10-20% of people were to opt out of secondary use of medical data, the other 80% would become useless because those opt-outers were "the most interesting data".

Really not sure why this would be the case.

European parliament advisor Francesco Vogelezang points at all the #privacy safeguards the parliament position on the #EHDS has introduced.

Okay agreed, but you'll need to bring those through the #trilogue in one piece and I think EU member states want to it all down.

Despite some gaps and unanswered questions this was a really interesting panel on the #EHDS, big thanks to @bisilisib for the moderation!

#PrivacyCamp24

Next up: #Privacy is Big Business: How #BigTech instrumentalises #PETs to expand its infrastructural power.

Featuring @KrisShrishak, @Thijmen_vg, Donald Bertulfo, and @carmelatroncoso, moderated by the one and only @Seda Gürses :)

#PrivacyCamp24 speakers @KrisShrishak and @ThijmenStar show easily how transparently corporations like #Amazon and #Google use their #PET products to increase their infrastructural power and take over entire markets.

It's really wow to hear Dr @carmelatroncoso, who worked on the #covid19 contact tracing protocol in 2020, tell how #Google and #Apple used their power over their mobile OS to make life hard for those building the protocol and the actual apps.

She's citing take-it-or-leave-it kind of power, in particular through #API design and unilateral changes to it.

Excellent argument made by @carmelatroncoso at #PrivacyCamp24:

#Privacy is not about protecting your data, it's about protecting *you* from effects and actions you'd rather avoid. It's a means to a very important end.