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Jan Penfrat

I'm following @beuc's online and I still fail to understand this:

Their representative polls found that "the further away from the GP, the less people are willing to share their " and yet BEUC concludes that while data use by medical profl's should require consent, for secondary use by and an option is enough. ❓❓❓

BEUC poll results about what people think about the use of their medical data
BEUC poll conclusions: 1. Respondents are very selective about the health data they are willing to share 2. |t depends on the entity and level of trust with whom they are ready to share health data 3. Respondents want to choose what happens to their health data and they prefer explicit consent 4. Different attitudes towards cross-border sharing of health data
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Jan Penfrat

The Commission official continues to peddle the "the gives patients more control over their data" nonsense. It doesn't.

#ConsumerDebates
Jan Penfrat

So good to see MEP pushing back and emphasising the risks of and abuse in particular for people when medical records are shared without consent as foreseen by the .

#ConsumerDebates
May 04, 2023, 08:02 AM·Public·Web
3boosts·0favorites
Public
Jan Penfrat

The 's entire secondary use regime for records is so shaky that the European doctors' association calls to completely exempt doctors from it. 🤐

#ConsumerDebates#privacy#dataprotection
Public
Jan Penfrat

Lobby group wants our medical records so they can be "competitive in the market", otherwise "higher prices", sorry folks.

Some people really have no shame.

#ConsumerDebates#EHDS#privacy
Public
Jan Penfrat

MEP points again at vulnerable folks 💪 Women in seeking abortion (abroad) need the protection provided by a regime.

Abuse risks are all over the Commission's proposal.

#ConsumerDebates
Public
Jan Penfrat

Great push-back from @beuc's against the insurance lobby: the whole idea of is the of , so abusing medical records for individual premiums and prices breaks the entire system.

#ConsumerDebates
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Jan Penfrat

Oh my, lobbyist pulls out the "data will cure " argument. And because data collection allegedly leads to lower insurance prices, it's really about not . 🤦

Sure.

#ConsumerDebates#EHDS
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Jan Penfrat

It's mind-boggling how the @EU_Commission rep just says "don't worry, anonymised records are not personal data" while ignoring a decade of and re-identification .

Example: vimeo.com/91204492

VimeoODI Friday Lunchtime Lecture: Why anonymity fails - Professor Ross AndersonBy Open Data Institute
#anonymisation#privacy#EHDS
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Jan Penfrat

Of course the lobbyist gratefully jumps on that falsehood, throwing all the and medical advancement journey BS that the insurance industry allegedly provides at us.

Public
Jan Penfrat

OK @beuc's event on is over.

tl;dr:

🤩 @TheProgressives MEP seems to have patients' right to front and centre. Kudos!

😖 The @EU_Commission seems to neither understand nor their own law . Sad!

💸 The wants to milk us for more profits. Surprise!

🤔 And defends ' rights but for some reason less so when it comes to the secondary use of records by 3rd parties.

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