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Nhs Care/data Scheme
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This is scheduled to start from March 2014. You are allowed an opt-out if you are so minded, but the onus is on you to contact your surgery if that's what you wish to do.
A reasonably simple and balanced article on the objectives, pros and cons of the scheme can be found in "Wired", for those interested.
http://
A reasonably simple and balanced article on the objectives, pros and cons of the scheme can be found in "Wired", for those interested.
http://
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@Pixie
I am not absolutely sure re;childrens data. I think its is implied consent for data sharing via this system for all children too, unless parents/guardians with parental responsibility opt-out on their behalf.
http://
I am not absolutely sure re;childrens data. I think its is implied consent for data sharing via this system for all children too, unless parents/guardians with parental responsibility opt-out on their behalf.
http://
'I want effective healthcare for children, but is it my place to give away their data?! '
^^^ Well if it's not yours then who I can't really see who else would be responsible. You'd give your consent on any examinations or surgery depending on age of your child so I don't really see how this is any different really.
^^^ Well if it's not yours then who I can't really see who else would be responsible. You'd give your consent on any examinations or surgery depending on age of your child so I don't really see how this is any different really.
I dunno... maybe it's because I'm a part of it all that I can't see it as such a big deal; I spend half my life gathering much worse information than this given the nature of my job so perhaps that's why I find it hard to get excited about.
I'm pretty excited about MASH - but that probably won't mean much to most people so I'll just keep my excitement to myself :c)
I'm pretty excited about MASH - but that probably won't mean much to most people so I'll just keep my excitement to myself :c)
If you are talking that venerable comedy-drama M*A*S*H, China, I share your excitement; On the other hand, if you are talking Multi-Agency Safeguarding Hub, not so much, although I applaud the initiative :)
For myself, I am not keen on implied rather than informed consent,nor do I see the need for the amount of personal data that is being proposed is shared, and I have little confidence in the ability of Government agencies to handle massive databases securely :) - So I will be opting out.
For myself, I am not keen on implied rather than informed consent,nor do I see the need for the amount of personal data that is being proposed is shared, and I have little confidence in the ability of Government agencies to handle massive databases securely :) - So I will be opting out.
I was okay with this, on the grounds that if I walked into A&E, or anywhere away from home, it would make sense for doctors there to be able to access my health records. But in fact this won't happen?
In that case I can't see any benefit at all to me, though big pharma may love the idea. Am I missing something?
In that case I can't see any benefit at all to me, though big pharma may love the idea. Am I missing something?
@jno You are correct that this is not a scheme to share patient data between various health professionals in a joined up way.
The benefits and objectives of this scheme is to provide detailed information for forward health strategic planning, and also to aid in developing priorities for drug development by the drugs companies - or at least, that is pretty much how it is being sold.
The benefits and objectives of this scheme is to provide detailed information for forward health strategic planning, and also to aid in developing priorities for drug development by the drugs companies - or at least, that is pretty much how it is being sold.
'I am not keen on implied rather than informed consent'
^^^ Mmmm... ok, but taking that a bit further; if say organ donation was an opt out rather than opt in thing then wouldn't that be implied rather than informed consent? I'm quite supportive of that. It's not really informed because to make an informed decision, we'd probably have to understand all the processes a lot better.
And then if you think about the various research programs that go on, perhaps in line with some of the drugs reps and all that, how much do patients really understand? I mean obviously consent is asked for and letters of explanation done but I do wonder how much people read them at times.
I do agree re goverment storing large amounts of data securely and that will probably be what makes my mind up on the whole thing.
^^^ Mmmm... ok, but taking that a bit further; if say organ donation was an opt out rather than opt in thing then wouldn't that be implied rather than informed consent? I'm quite supportive of that. It's not really informed because to make an informed decision, we'd probably have to understand all the processes a lot better.
And then if you think about the various research programs that go on, perhaps in line with some of the drugs reps and all that, how much do patients really understand? I mean obviously consent is asked for and letters of explanation done but I do wonder how much people read them at times.
I do agree re goverment storing large amounts of data securely and that will probably be what makes my mind up on the whole thing.
"^^^ Mmmm... ok, but taking that a bit further; if say organ donation was an opt out rather than opt in thing then wouldn't that be implied rather than informed consent? I'm quite supportive of that. It's not really informed because to make an informed decision, we'd probably have to understand all the processes a lot better."
Yes, an opt-out organ donation scheme would be a Presumed Consent scheme. The difference for me is that there are tangible patient benefits at the end of an organ transplantation, and obviously as an individual I might be the lucky recipient if I ever found myself in need of an organ transplant.
The difference between the schemes of course is that an opt-out scheme for organ donation is not happening any time soon, and before it was introduced I would imagine there would be a very high profile debate and information campaign about it; With the NHS England care.data scheme we can hardly say the same thing. Secondly, the individual benefits to us from the data collection scheme is far less tangible and much less uncertain; and finally organ transplantation is anonymised pretty well; I fail to see why they need the level of patient identifying information that the claim.
So - I am probably not being entirely consistent, but I do have a rationale behind my decision :)
Yes, an opt-out organ donation scheme would be a Presumed Consent scheme. The difference for me is that there are tangible patient benefits at the end of an organ transplantation, and obviously as an individual I might be the lucky recipient if I ever found myself in need of an organ transplant.
The difference between the schemes of course is that an opt-out scheme for organ donation is not happening any time soon, and before it was introduced I would imagine there would be a very high profile debate and information campaign about it; With the NHS England care.data scheme we can hardly say the same thing. Secondly, the individual benefits to us from the data collection scheme is far less tangible and much less uncertain; and finally organ transplantation is anonymised pretty well; I fail to see why they need the level of patient identifying information that the claim.
So - I am probably not being entirely consistent, but I do have a rationale behind my decision :)
Thanks china. That sounds a good idea- about time.
I'm not sure of the personal benefits to me sharing data, but if it helps in any way with research and resources it should be generally helpful. I can't see any disadvantage to me, personally either.
I don't agree that implied consent is actually consent at all. I don't see how it can be, as you can't assume people know all the facts. Although, inconsistently for me too, i would be happy with an opt-out transplant system.
I'm not sure of the personal benefits to me sharing data, but if it helps in any way with research and resources it should be generally helpful. I can't see any disadvantage to me, personally either.
I don't agree that implied consent is actually consent at all. I don't see how it can be, as you can't assume people know all the facts. Although, inconsistently for me too, i would be happy with an opt-out transplant system.
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