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Replying to @Asher_Wolf
It's not just the Mirena. I had to sign a similar form at another hospital to get treatment from their neurologist. A while later I found my data used in a study and published in a journal. The whole time I was in a clinical trial but was not informed. Then my treatment was cut.
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Replying to @halcionandon @Asher_Wolf
If you were in a clinical trial without explicit informed consent, particularly one involving industry, it's a breach of NHMRC guidelines, privacy legislation, and most internal ethics regulations as well. Worth a complaint I'd say
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Replying to @GidMK @Asher_Wolf
If I only had the energy. I'm too sick and that's what they're counting on. There were many other patients involved so I'm wondering if this is becoming standart practice in certain departments of public hospitals. A way to make make money or at least make ends meet
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Replying to @halcionandon @Asher_Wolf
I'd be very surprised. I'd be a bit surprised if industry did it also - enormous risk financially from lawsuits and such and you can easily lose accreditation and be banned from conducting clinical trials. Enrolling someone in a clinical trial without consent is a big deal
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Worth noting tho - "clinical trial" has a fairly specific meaning. It would not cover, for example, anonymized retrospective review of medical records
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Replying to @GidMK @Asher_Wolf
It paper scientific paper with an abstract, introduction, methods discussion, conclusion, etc. Published in a medical journal is not an "anonymous retrospective review".
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Replying to @halcionandon @Asher_Wolf
That's not necessarily true, but it does sound like you were enrolled in a clinical trial. Definition is here: https://nhmrc.gov.au/about-us/publications/australian-code-responsible-conduct-research-2007 …
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Replying to @GidMK @Asher_Wolf
I guess they really did it despite uninformed consent after all.
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I think there's been some confusion, apologies. When I said "I'd be very surprised", I was referring to the comment that it was becoming standard practice rather than your experience. Certainly isn't standard practice where I work!
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Replying to @GidMK @Asher_Wolf
Okay I see. Apology accepted. I'm glad it isn't that way where you work. I wish it wasn't that way anywhere because patients without the money to go private are being held to ransom. Sign form or no treatment.
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