"This weekend, 17 of the 20 #NHS trusts that were using #Meta Pixel confirmed they had pulled the #tracking tool from their websites."

It's 2023 and:

"Eight issued apologies to patients. Multiple trusts said they (...) were not aware that they were sending #patient data to #Facebook."

https://www.theguardian.com/society/2023/may/27/nhs-data-breach-trusts-shared-patient-details-with-facebook-meta-without-consent

#privacy #consent #GDPR #EHDS #BigTech #HealthData

If you want to be asked for your permission before corporations get access to your private #medical records in the #EU, there is a big petition for you to sign that demands exactly that:

https://act.wemove.eu/campaigns/medical-records

#WeMove #EHDS #healthData #medicalrecords #health #privacy #dataprotection

While Europe hotly debates how to best implement a #privacy-respecting #optin or #optout #consent solution for #health data, #Germany simply ignores #patients rights altogether and forcibly stores personal data about all #breastimplants in a giant government database.

Germany, the alleged land of privacy 🤷‍♂️

https://www.heise.de/news/Digital-Health-Implantateregister-Deutschland-startet-Probebetrieb-9059184.html
Via @SchulzkiHaddouti #EHDS #GDPR #healthdata #ePA

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

#ConsumerDebates #privacy #dataprotection #healthdata

I'm following @beuc's #EHDS #ConsumerDebate 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 #HealthData" and yet BEUC concludes that while data use by medical profl's should require #OptIn consent, for secondary use by #BigPharma and #BigTech an #OptOut option is enough. ❓❓❓

Czech stakeholders: Secondary use of health data still needs fine-tuning https://www.euractiv.com/section/health-consumers/news/czech-stakeholders-secondary-use-of-health-data-still-needs-fine-tuning/?utm_source=dlvr.it&utm_medium=mastodon #europeanhealthdataspace #healthdata #secondaryuseofdata

This week I said things about the EU's #health data space proposal (#EHDS), for instance that under that proposal we would be better protected against website #cookies than against the misuse of our most intimate medical records.

Summary: https://www.akeuropa.eu/en/european-health-data-space-data-protection-gaps-and-additional-burden-health-system-or-opportunity

Video recording: https://yewtu.be/stAQJuiXvyI?t=1460

#privacy #DataProtection #digitalrights #healthdata

Starting the 2nd day of the Solid Symposium with a session on “Applications for Health Data Management with Solid” #sosy23 #solid #healthdata #privacybydesign

@petros And maybe:

3) when will we ask patients whose data is being used by third parties for profit whether they're OK with it?

#EHDS #privacy #dataprotection #HealthData

1/3 🚨 @EU_Commission's European Health Data Space #EHDS proposal wants to better use your health data. BUT at the cost of your #privacy. 👀

We say: Decisions about our private #HealthData belong to us. ✊

Read our position paper: https://edri.org/our-work/eu-proposed-health-data-regulation-ignores-patients-privacy-rights/

RT @INB_Official
New #JobOffer | Research Engineer ETL for Health Data at @BSC_CNS to work in the DATOS-CAT project for the implementation and database analysis in precision medicine.

➡️https://inb-elixir.es/jobs/research-engineer-etl-health-data-bsc-life-sciences-department

#HealthData #population #extraction #ETL #databases #bioinformatics #jobalert

RT @hall_vub@twitter.com

📅 Save the date — We’re announcing that HALL will organise its first symposium on April 26th 2023 in Brussels, themed ‘Challenges and Opportunities of Sharing #HealthData’ with the #EHDS under the spotlight of the discussion!

The programme of keynotes and panels is coming soon!

🐦🔗: https://twitter.com/hall_vub/status/1616361846407053317

#CfP on "Health Data and Health Data Spaces: Actors, Narratives, and Surveillance?" on 7-8 June 2023 in Lausanne!

Co-organised by @SophieWeerts, @MettlerReal (@IDHEAP, @FDCA_UNIL) & @MeliLevy (@ids_unine)

Abstracts before Feb 20 👉 http://unil.ch/data-conference2023

#HealthData #HealthDataSpace #SelfTrackingTools #DigitalSolidarity

Hello 👋 I am Olena,
Lawyer & Researcher;
I work on #GeneticData, #HealthData Governance; #Privacy;
Comparative approach to common and civil law countries.

RT @CenDemTech@twitter.com

"To help women seeking abortions, [@AlexReeveGivens@twitter.com] said, ...companies could simply choose to significantly limit the kind of user info they collect to keep them from having to even deal with turning over [#HealthData] in the first place."

https://finance.yahoo.com/news/americas-tech-giants-have-a-new-responsibility-in-the-post-roe-world-172210063.html

🐦🔗: https://twitter.com/CenDemTech/status/1544668234711834625

RT @CVPIP@twitter.com

cc @PaulNemitz@twitter.com @W_Wiewiorowski@twitter.com @EU_Justice@twitter.com @EU_EDPB@twitter.com @EU_EDPS@twitter.com @EP_Justice@twitter.com @CPDPconferences@twitter.com

#HealthData https://twitter.com/vincib/status/1527562147240333312

🐦🔗: https://twitter.com/CVPIP/status/1527604609874804738