My wife (NHS nurse) and I (NHS IT tech) received ours a while ago, looked at each other and ticked Opt out after a second or so's consideration, then returned it.
Question is, who do you contact to confirm your Opted status?
Pressure is mounting on NHS England to stall its incoming data grab of GP-stored medical records, after another health body said that the government needed to improve public awareness of the controversial scheme. A stronger campaign was demanded from top doctors at the British Medical Association on Monday. The care.data plan …
There was a mailshot about the Summary Care Record which would have taken place over the last two years or so. This came with an opt-out form and was reply paid. From what I remember it was purple. This is the record that could be accessed for your health care e.g. in an A&E department or emergency GP service at the weekends or evenings.
Care.Data is completely separate. It will not be available to people treating you. Leaflets only came out in the second half of January this year and did not feature an opt out form (there are several good suggestions for forms around here). However opting out of the SCR will not have any effect on this extraction. This needs to be done separately.
Be sure which one you have opted out of.
If only because the leaflet they so helpfully sent through the junk mail didn't have anywhere you could actually do that. As others have said, you may be thinking about the Summary Care Record, which is another thing entirely, and for which they did provide an opt-out form.
The best place to go I've found is www.care-data.info which gives quite a bit more info, as well as links to opt-out forms you can send to your GP.
I'm still waiting to be told about this, despite going to see the consultant and doctor on a fairly regular basis.
Now they claim they're going to wait 6 months so they can communicate the advantages more effectively (note the convenient lack of any mention of the disadvantages nor any attempt at fixing the holes - it's difficult to see how this whole mess could ever be in our best interests).
More effective communication? Don't make me laugh - so far in my case there has been zero communication (effective or otherwise).
I've managed to put in an opt-out form using the advice given from the excellent Light Blue Touchpaper blog. Here's the article with an opt-out form download:
I have to go to the Doctor's again before March and certainly intend to deliver my opt-out letter; so assuming that I do, I still think if this goes ahead 'on schedule' (won't that make a change!), the Government should be prosecuted over it.
Guess it's a long time since I read 'The Hitchhiker's Guide' because that comparison is so apropos I'm slightly ashamed it didn't occur to me!
My GP's surgery had a stack of leaflets made up from the details supplied on www.care-data.info, which the nice lady at reception had to resupply because everyone in front of me had taken a copy. These had the "fill in details" section on them already there to be filled in, very handy.
Just thought I would share.
The best option I can see is to opt out and I would advise everyone to do the same.
Any worry that this may be the wrong option can be set aside by noting that we will be given (or can demand) a right to opt-in later. I cannot see any government saying they will leave those who did not initially sign-up for what they say is good for us languishing in that plight. That would be electoral suicide.
They can have our opt-ins when they have convinced us it is good for us.
Under article 8 of the ECHR, we're supposed to have a right to privacy. Indeed this seems to be the main reason the Snowden revelations have caused so much blustering amongst politicians - they're not really worried about terrorists knowing they're under surveillance, they're worried that knowledge of "lawful" activities that are in fact likely contrary to Article 8 will result in a direct legal challenge that could probably succeed.
I'm pretty sure we have an Article 8 right not to have our poorly-anonymised medical records passed to the NSA and sold to Big Pharma and the insurance industry, but because of what we now know, we can be pretty sure that attaching an opt-out label to the data will simply call it out for special attention. It certainly won't have any other effect.
Nevertheless, I'd encourage everyone to at least go through the motions of opting out - at least it's then explicit that we're not quite so fond of constant surveillance as the spooks building their FacelessBook seem to imagine.
Unfortunately, I suspect more people would be enraged at the thought of foreigners underwriting our human rights than that of sharing the details of their treatment for erectile dysfunction.
If you read the privacy impact assessment here:
you'll also see that on page 13 it says you have a right to object to your data being processed under section 10 of the Data Protection Act (DPA). The opt-out being offered by care.data (which is what you'll get if you inform your GP using the forms being discussed - and operates by placing special codes in your GP data) isn't the same thing. It is being offered as an opt-out but will in fact still allow some use to be made of your private data. As such it is a con.
Everyone should actually be insisting on the full opt-out which is their right under the DPA.
Trying to access the link to the care.data website in your article, from a PC on my desk on the NHS network brings up a series of dire warnings...
Warning: Questionable Internet use policy
Reason: Downloads site
The organisation’s Internet access and usage policy suggests you should not be visiting this website. Transferring data to an external website may infringe the internet usage policy. Please think very carefully before proceeding. If in doubt, please contact a member of the Information Governance Team or refer to the specific policies on the intranet.
So - I'm not going to be able to opt-out from work - and neither are a million other people.
No, it's not. Approved purposes are medical research. And the data is pseudonymised (i.e. if you're not inside the NHS, which has this data anyway in this form, it's not readily identifiable).
Insurance companies and profit makers get Green data, which is pre-aggregated.
You're sure about that, are you? Is that what the law restricts them to, or is that just what their policy is this week? Clue: it's the latter.
"it's not readily identifiable" - +1 for weasel wording.
as for the data only being visible to those "inside the NHS" - no thanks. what happens at the GP stays at the GP, it doesn't get strewn around 300,000 employees of the NHS. and what, pray, /is/ the NHS these days? virgin? crapita?
6 month delay is good news, but will be used for propaganda of the anonymised type which the beeb are faithfully regurgitating. NHS number, anyone?
Screw them. I don't recall having been sent anything. I certainly won't have read it if it was sent. It's been years since I've been to the quack. I'm certainly not downloading a form to fill in and post elsewhere, certainly not the doctors surgery as whilst I know where it is I don't the address.
Best solution is to print-screen the form add a tick in whatever they are calling the 'fuck off' box these days, and emailing it as an attachment to whomever is the current political gobshite that is in charge of the NHS. Let that arsehole deal with it.
I had been expecting this so kept waiting, It has not come through my post box. I asked and no one on my street has had it. Granted, due to cuts in the postal service last year we only get a postman about twice a week now and it is rarely the same person, so my guess is that these "inserts" are still sitting at the post office.
Last year I got a letter that was 13 months old, they had found hundreds of bags of stolen mail but were afraid to tell people about it, so the majority of it is STILL sitting in my local postal depot!.
They should OPT everyone OUT, and then send out the leaflets to let people Opt IN...
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