Thanks @pipip medconfidential was the thing I was struggling to remember. I heard about it on a radio show/podcast and meant to visit the website but forgot what it was.
Does this just apply in England and Wales? What's the deal in Scotland?
I'm all for it and can't see what all the fuss is about. I'm proud to be a member of UK Biobank which is doing sterling work in researching various health issues and is of utmost importance in future diseases. What the hell does it matter if anybody knows if you've got piles, VD, cancer or anything else for that matter. What do you think they will do with the information. Anybody who uses social media (including this one) is already giving away loads of information and the government already knows everything about me. I'd far rather any medic treating me in an emergency can call up my past medical history quickly.
I support UK Biobank too, Lizzie. My only gripe is that it is perhaps too confidential. When we joined up we gave blood samples. They must have known when they looked at them that I was suffering from an undiagnosed form of cancer. They never told me. I found out by accident.
OMG that is awful. I remember thinking about joining an MRI research group at a uni where I would have had to give consent for my brain scans to be sent to my GP in the event that they found anything untoward.
It's all a matter of trust. Governments, not just this one, have abused our trust. I have absolutely no problem with my fortunately boring medical data being used for research - well I have if it's unethical -we can discuss this later .. What I don't want is for my data to facilitate the American medical industry or the sale of the NHS I'm wondering whether meantime sale of medical data might be a sweetener but then I'm a disillusioned idealist
@pansyface, that is awful and I'm sorry you had to find out by accident. I was told however that if they did find anything nasty, then the GP would be informed. It was one of the reasons I was happy to do all the tests. Obviously it didn't work in all cases, although I sincerely hope it did for the majority.
If my data can be used to improve healthcare for others through research, I am all for that. My only concern is that the data will be mined by healthcare profiteers.
"What is hateful to you, do not do to your neighbour".
I’m glad the scheme has been delayed but it depends on more opting out. When high profile NHS doctors have opted out, not an easy decision, you know that something isn’t right. I’ve heard that the full process to opt out is a bit complicated though, not just a single form..
Years ago when the NHS records were put online,I opted out,then my friend and I were doing IT training,she typed in my name and accessed a completely different NHS trust in a completely different county,it should NOT have been there. Having read about this latest, intended online records, apparently,it's an American company, collecting data,and they have a very bad reputation for cyber security.
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What the hell does it matter if anybody knows if you've got piles, VD, cancer or anything else for that matter. What do you think they will do with the information.
Anybody who uses social media (including this one) is already giving away loads of information and the government already knows everything about me.
I'd far rather any medic treating me in an emergency can call up my past medical history quickly.
I have absolutely no problem with my fortunately boring medical data being used for research - well I have if it's unethical -we can discuss this later ..
What I don't want is for my data to facilitate the American medical industry or the sale of the NHS
I'm wondering whether meantime sale of medical data might be a sweetener but then I'm a disillusioned idealist