Discover and read the best of Twitter Threads about #ehds
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I just re-read what @GilliosaSB wrote about health data and what it has to do for patients. I can't help but feel that 99% of the #EHDS debates are missing the point. 🧵 mpneurope.org/post/sync-not-…
First, it usually starts with the general hype about all that that magic EHDS will deliver for us. Have you ever seen what real health records look like?! Some places in Europe still don't have digital ones 🤔🤔🤔
Then, even if there are half-way decent records- have you actually ever tried getting anything *out* of basically any system? And I'm not even referring to registries- that's an entire different ballpark- just your own, personal records
An advocacy colleague of mine just complained about having had to sit through a talk short of an hour on how to talk patients into participating in clinical trials *without* a single reference to what clinical trials have to deliver for patients, so here some explaining 🧵
relevant for any patient considering participating in a clinical trial and equally, any patient advocate asked to provide 'a patient perspective' on clinical trials
in cancer, considering ignoring if it's a trial where the risk to yourself and your life is negligeable or you don't dare contradicting your oncologist anyway (though consider changing oncologist in that case)
🤔 How does the @Europarl_EN decide which committee is responsible for a file? Why were the #DataAct allocated to @EP_Industry while #EHDS went to @EP_Justice? As requested by many, my new #EP thread will explain the opaque steps before #MEPs can finally start to work (🧵👇)
After its adoption by the College of Commissioners and its successive public presentation by the @EU_Commission, the proposal is - in line with the ordinary legislative procedure - transmitted to @Europarl_EN and @EUCouncil in order for the co-legislators to make a co-decision.
Step 1️⃣ the Referral Unit in DG Presidency checks the legislative proposal mainly on the basis of the @Europarl_EN's ANNEX VI in the 'Rules of Procedures', makes a referral to a lead committee and appoint opinion giving committees. This decision is then announced in plenary. 
