Thread by @BettinaRyll

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

As they say, any regulation is only as good as its enforcement. Who knows, suing hospitals for not being able to hand patients back their data in a FAIR format might be the next niche business model for lawyers....

Just because patients don't get their own data obviously doesn't mean others don't want to play with it. So the total irony of the situation is that those very same people who go 'OOHHHH patients can't have their own data' now come 'PLEASE can we have your data'

Unless you have experienced it yourself, you got no idea how perverse the system actually is 'you want a copy of your scans? OH, not sure whether you can- I have to ask the doctor whether that is possible'

'FHS, it's my RIGHT and besides, I know it's your standard line- you said the same the LAST time I was here 🙄' 'You don't have to wait, it will be there the next time you come'

'HA. Nice try- we tried that last time. First, the disc wasn't ready. And THEN you had the guts to charge us for 'having to access the archives' 'Oh, it's no worry, we just wait' IN FRONT OF YOUR COUNTER UNTIL WE GOT THE IMAGES.

(and before now anyone complains about me being a bitch- I haven't tagged the hospital where this happened, have I?)

So if you strip away all the whining and the complaints and the envy (nope, you can't just sell whatever you like, nope, you can't have surveillance at your heart's content to whatever you fancy either)

and yes, we *will* eventually agree on a common interpretation of the GDPR (could have had that from the beginning, but hey, when did we Europeans ever agree on anything before it really hurt? I bet we'll have a Fado song on the GPDR one day)

and there will be some other feathers to pluck- eHR standards anyone? AHH those commercial models locking in hospitals (I am curious to hear the narrative on how THAT benefits patients 🤔)

Registries? Surely, a registry should be judged on the insights and value it delivers to the society that pays for it. #DMTR got stuck the moment they discovered differences in outcomes between hospitals and that was the end of it 🙄

Bioarchives? (They are commonly referred to as 'banks' but banks are about keeping money going while our so-called 'biobanks' largely just sit on samples) They'd have real value if they were banks AND had data....Christmas is coming soon.

I am sure there are a gazillion of other culprits we even haven't come across. But the utter beauty of it all? If we are serious about getting the EHDS to work

we need to address those vested interests. We need a version where everyone gets what they need. But, thanks to GDPR, not at the expense of society or patients as a particularly vulnerable group of society.

So, the more time passes and the more of the altruism pep-talk we are getting ('give your data no strings attached so we can make money') while struggling to even access our own data to do what we ourselves need

the more appreciation I develop for those who anticipated what would be coming and who thought up the GDPR. That's obviously no excuse for bad implementation- more political than else

but in the end, it's about delivering value to and protecting the interests of the person most concerned. So Gilly's thoughts are a good read where to get started me thinks