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Post by staffordshrew on Jun 9, 2021 13:39:27 GMT 1
Don't think many will mind the government "grabbing" your NHS data for purposes other than your own medical needs, but for anyone that does:-
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Post by venceremos on Jun 9, 2021 14:26:45 GMT 1
More likely most people won't be aware of what's happening.
Do I mind? Mind what? Nobody's explained the exercise to me, nobody's told me what the data is needed for, nobody's told me who will be authorised to access it, nobody's explained to me whether and how and when I can be identified from my data.
Why do I have to opt out? Why aren't I being asked to opt in?
In the absence of the government or NHS Digital attempting to ask for my informed consent, I'm opting out.
Nothing we own is as valuable as our data.
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Post by Deleted on Jun 9, 2021 15:01:00 GMT 1
The first I had heard about it was yesterday when Hancock made his statement. To my way of thinking there has been absolutely no publicity about the opt out (not that I would want to). More surreptitious government.
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Post by venceremos on Jun 9, 2021 15:02:49 GMT 1
The first I had heard about it was yesterday when Hancock made his statement. To my way of thinking there has been absolutely no publicity about the opt out (not that I would want to). More surreptitious government. No accusation here, just curious - why wouldn't you want to opt out?
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Post by darkshrew on Jun 9, 2021 15:07:35 GMT 1
The first I had heard about it was yesterday when Hancock made his statement. To my way of thinking there has been absolutely no publicity about the opt out (not that I would want to). More surreptitious government. No accusation here, just curious - why wouldn't you want to opt out? Why would you want to opt in ?
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Post by Deleted on Jun 9, 2021 15:07:38 GMT 1
Don't think many will mind the government "grabbing" your NHS data for purposes other than your own medical needs, but for anyone that does:-
I wonder how many will be put off by this palaver? Surely they could just do an online name details and click opt out option?
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Post by venceremos on Jun 9, 2021 15:11:15 GMT 1
No accusation here, just curious - why wouldn't you want to opt out? Why would you want to opt in ? Well that's it, you don't get the chance to. At least if the requirement was to opt in the institutions wanting access to your data would have to make a case for doing so, rather than your consent being assumed and the data taken.
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Post by darkshrew on Jun 9, 2021 15:26:57 GMT 1
Why would you want to opt in ? Well that's it, you don't get the chance to. At least if the requirement was to opt in the institutions wanting access to your data would have to make a case for doing so, rather than your consent being assumed and the data taken. Agree completely - the government are very keen to set the rules for companies and not allowing them to have these opt ins by assumption. One rule for them another for everyone else.
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Post by shrewshrew on Jun 9, 2021 15:31:03 GMT 1
There’s also a local data collection exercise going on now which isn’t very well publicised. Contact your local GP if you want to opt out. How anyone without access to the internet is expected to know about these things is beyond me. It means people will automatically be opted in because they weren’t aware of it! stwics.org.uk/about-us/one-health-and-care
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Post by northwestman on Jun 9, 2021 15:56:20 GMT 1
Not so easy to opt out. A simple click of the mouse on 'opt out' should be sufficient - instead they make you go through hoops to achieve that objective - deliberately so in my estimation.
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Post by Deleted on Jun 9, 2021 16:00:45 GMT 1
Well that's it, you don't get the chance to. At least if the requirement was to opt in the institutions wanting access to your data would have to make a case for doing so, rather than your consent being assumed and the data taken. Agree completely - the government are very keen to set the rules for companies and not allowing them to have these opt ins by assumption. One rule for them another for everyone else. Didn’t they change the rules for union membership as well?
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Post by staffordshrew on Jun 9, 2021 16:17:59 GMT 1
There’s also a local data collection exercise going on now which isn’t very well publicised. Contact your local GP if you want to opt out. How anyone without access to the internet is expected to know about these things is beyond me. It means people will automatically be opted in because they weren’t aware of it! stwics.org.uk/about-us/one-health-and-careTo be fair this is described as "Completely confidential and secure, it’s designed to help doctors, nurses and other registered health and social care professionals directly involved in your care to make better, safer decisions".
The government grab above is nothing to do with your medical care as opting out will not affect your medical care.
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Post by shrewshrew on Jun 9, 2021 16:22:28 GMT 1
There’s also a local data collection exercise going on now which isn’t very well publicised. Contact your local GP if you want to opt out. How anyone without access to the internet is expected to know about these things is beyond me. It means people will automatically be opted in because they weren’t aware of it! stwics.org.uk/about-us/one-health-and-careTo be fair this is described as "Completely confidential and secure, it’s designed to help doctors, nurses and other registered health and social care professionals directly involved in your care to make better, safer decisions".
The government grab above is nothing to do with your medical care as opting out will not affect your medical care.
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Post by ShrewsburySTFC on Jun 9, 2021 17:45:32 GMT 1
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Post by venceremos on Jun 9, 2021 18:01:35 GMT 1
Thanks, just tried it - despite the fact it was checked only last week when I had the vaccination, the website's claiming it can't find my details. There are only three details to input. I haven't changed my name or date of birth so, unless they've changed my NHS number in the past week, something's distinctly not right about this.
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Post by Deleted on Jun 9, 2021 18:17:31 GMT 1
The first I had heard about it was yesterday when Hancock made his statement. To my way of thinking there has been absolutely no publicity about the opt out (not that I would want to). More surreptitious government. No accusation here, just curious - why wouldn't you want to opt out? In my opinion, Hancock gave a reasonable answer to why patients records were important for research. We are being tracked on every move we make on the internet etc etc.
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Post by venceremos on Jun 9, 2021 18:37:13 GMT 1
No accusation here, just curious - why wouldn't you want to opt out? In my opinion, Hancock gave a reasonable answer to why patients records were important for research. We are being tracked on every move we make on the internet etc etc. Did he say who would be able to access the date and for what purposes? I didn't hear it. Yes, we're tracked on the internet. We're given some free services to entice us to use it and open ourselves to our data being exploited. "Those who own the data own the future", as Yuval Noah Harari writes in '21 Lessons for the 21st Century'.
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Post by Deleted on Jun 9, 2021 19:07:00 GMT 1
In my opinion, Hancock gave a reasonable answer to why patients records were important for research. We are being tracked on every move we make on the internet etc etc. Did he say who would be able to access the date and for what purposes? I didn't hear it. Yes, we're tracked on the internet. We're given some free services to entice us to use it and open ourselves to our data being exploited. "Those who own the data own the future", as Yuval Noah Harari writes in '21 Lessons for the 21st Century'. university researchers hospital researchers medical royal colleges pharmaceutical companies researching new treatments
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Post by SeanBroseley on Jun 9, 2021 20:51:37 GMT 1
This has been bubbling along for months and I'm convinced that the government thought that they had successfully pulled a flanker because MSM has not been picking up on it. Respect to Caroline Malloy and her team at Open Democracy. Link to their articles tracing the contracts that the NHS has with US data companies and plans to reshape the NHS in the coming years: www.opendemocracy.net/en/ournhs/Their investigations in this area has come up against the recently publicised delays and refusals of FOI requests. Three points 1) People should need to contract in to their data being shared rather than having to contract out of it. 2) The data is not anonymised. It is pseudonymised using your NHS number. It is your NHS number that draws your records together from across the NHS. 3) Rather than being used for private profit I would only consider my data being used to create value within the NHS as a public good. You can tell that the government does not want us to opt out because the process involves paper application forms: one to the NHS (which has, no doubt, disappeared into a black hole) and one to my GP practice. As if GP practices haven't got enough to deal with at the moment as well.
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Post by staffordshrew on Jun 9, 2021 21:12:50 GMT 1
I have a simple principle: opt out unless the data tracker can convince me it's in my interests to opt in. So far I am not convinced, but I could always opt in later.
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Post by venceremos on Jun 9, 2021 22:32:54 GMT 1
Did he say who would be able to access the date and for what purposes? I didn't hear it. Yes, we're tracked on the internet. We're given some free services to entice us to use it and open ourselves to our data being exploited. "Those who own the data own the future", as Yuval Noah Harari writes in '21 Lessons for the 21st Century'. university researchers hospital researchers medical royal colleges pharmaceutical companies researching new treatments Sean's post sets it out very well. I would say we make our own choices but, when consent is assumed and withdrawing consent is made awkward, that's manifestly not the case. Your data will be sold, sooner or later, and you don't know who the buyers might be.
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Post by Chief Inspector Swan on Jun 9, 2021 23:02:11 GMT 1
Great initiative this from Hancock & Team NHS, would implore all who read this not to opt out.
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Post by shrewshrew on Jun 10, 2021 5:00:14 GMT 1
There’s also a local data collection exercise going on now which isn’t very well publicised. Contact your local GP if you want to opt out. How anyone without access to the internet is expected to know about these things is beyond me. It means people will automatically be opted in because they weren’t aware of it! stwics.org.uk/about-us/one-health-and-careTo be fair this is described as "Completely confidential and secure, it’s designed to help doctors, nurses and other registered health and social care professionals directly involved in your care to make better, safer decisions".
The government grab above is nothing to do with your medical care as opting out will not affect your medical care.
I think this depends on how trusting you are. Once the data has been moved out of the GP system, which you can opt out of if you know about it,, who is to say that the data will not be passed to private companies. Have there been any assurances? If no one has any involvement with social care, should all of your data be accessible to them? The same principles re opt out apply as for the National system, if you are not aware of it, how can you opt out?
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Post by pughywasfree on Jun 10, 2021 10:42:24 GMT 1
The government, no the whole establishment and the media are fking disgusting. Time and time again the public are taken advantage of. We are heading to a very dark place and I don't think the public have the ability to stop it.
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Post by pughywasfree on Jun 10, 2021 10:45:55 GMT 1
Thanks, just tried it - despite the fact it was checked only last week when I had the vaccination, the website's claiming it can't find my details. There are only three details to input. I haven't changed my name or date of birth so, unless they've changed my NHS number in the past week, something's distinctly not right about this. Not trying to be condescending but did you leave any zeros out of your DOB? for example writing 01.01.2000 instead of 1.1.2000? might be the issue as i have just done it and it has found me straight away.
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Post by venceremos on Jun 10, 2021 12:16:42 GMT 1
Thanks, just tried it - despite the fact it was checked only last week when I had the vaccination, the website's claiming it can't find my details. There are only three details to input. I haven't changed my name or date of birth so, unless they've changed my NHS number in the past week, something's distinctly not right about this. Not trying to be condescending but did you leave any zeros out of your DOB? for example writing 01.01.2000 instead of 1.1.2000? might be the issue as i have just done it and it has found me straight away. Fair point, it would be an easy mistake to make but, no, I entered the zeros. Just tried again with and without spacing in my NHS number - neither worked. Can't believe that a week ago it got me my vaccination and now I'm not recognised. It's bad enough that my consent is assumed so that I have to take action to opt out, but it's even more annoying how difficult they're making it for people to exercise their choice.
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Post by venceremos on Jun 10, 2021 13:12:54 GMT 1
It's ironic that the cookies default settings for any site you visit online are not to accept them - you generally have to opt in to any that aren't simply functional.
Meanwhile, the default setting for your personal health data is that you consent to its use by unknown third parties and it's not clear how you can opt out - that's if you're even aware that this is happening and you have a choice.
Data protection rights? What a sick joke.
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Post by martinshrew on Jun 10, 2021 13:47:43 GMT 1
If any of you carry a smartphone and are moaning about this you haven't a leg to stand on.
Nevermind share your data, your phone listens to you and tracks everything you do.
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Post by pughywasfree on Jun 10, 2021 15:45:46 GMT 1
If any of you carry a smartphone and are moaning about this you haven't a leg to stand on. Nevermind share your data, your phone listens to you and tracks everything you do. Fk it then, might aswell give all my info away to the highest bidder.
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Post by martinshrew on Jun 10, 2021 16:15:45 GMT 1
If any of you carry a smartphone and are moaning about this you haven't a leg to stand on. Nevermind share your data, your phone listens to you and tracks everything you do. Fk it then, might aswell give all my info away to the highest bidder. If you've got a smart phone you've already done it.
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