Author Topic: NHS SPine: 'The Big Opt Out' campaign gaining momentum  (Read 7895 times)

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Offline Geoff Reid

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NHS SPine: 'The Big Opt Out' campaign gaining momentum
« on: April 28, 2007, 09:15:58 PM »

Administrator Comment This 2007 topic has been updated today - 10th February 2014 - see post #2 for latest information

Todays Swindon Advertiser


As news of the compulsory uploading of patients records onto the NHS spine spreads, more patients are handing their GP's letters 'opting out' of having their entire medical history shared across the entirety of the NHS on a system which isn't proven to be managed properly or secure.

Please visit http://www.nhsconfidentiality.org/?page_id=3 to gain a better understanding of the NHS spine than I am capable of portraying.

Example:

Quote

The NHS Confidentiality campaign was set up to protect patient confidentiality and to provide a focus for patient-led opposition the government’s NHS Care Records System. This system is designed to be a huge national database of patient medical records and personal information (sometimes referred to as the NHS ’spine’) with no opt-out mechanism for patients at all. It is being rolled out during 2007, and is objectionable for many of the same reasons as the government’s proposed ID database.

YOUR PRIVACY

Your medical confidentiality is at risk from this new database, as over a million NHS employees and central government bureaucrats will have access to not only your medical records but also your demographic details—name, address, NHS Number, GP details, phone number (even if it’s ex-directory) and mobile number.

There is no opt out whatsoever for your demographic details. You can only have them hidden in special circumstances if the police or social services request it—if, for example, you are a celebrity or on a witness protection scheme. Many public and private sector workers will otherwise have access to your address and phone number, from social workers to pharmacists.

You will eventually be allowed to ‘lock down’ some of your medical details (though the security mechanisms haven’t been built yet). But although you can keep some of your medical details confidential from some of the doctors involved in your care, they can override this if they think it’s necessary, and there is no way for you to keep your information confidential from civil servants. You will no longer be able to attend any Sexual Health or GUM (Genito-Urinary Medicine) Clinic anonymously as all these details will also be held on this national database, alongside your medical records. For the first time everyone’s most up-to-date and confidential details are to be held on one massive database.



Click >> here << for more information, here for the latest news, and here to find out what you can do about it.

For a downloadable opt out letter, click >> Here <<

 
« Last Edit: February 10, 2014, 02:45:40 PM by Geoff Reid »



Offline Geoff Reid

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #1 on: February 10, 2014, 02:42:01 PM »

The bastards are after your medical data again.....

Sometime in January 2014 you may have received a leaflet via junk mail, entitled ‘Better information means better care‘ (2MB PDF file).

It may not be clear from the leaflet that a significant change in what is done with your medical records is about to happen.

Unfortunately, NHS England – the commissioning body that now runs the NHS in England – decided not to include an opt out form with the leaflet and the information in it says you should “speak to your GP practice” if you want to stop your or your family’s confidential medical information being uploaded and passed on.

This is misleading.

You do not have to speak with your doctor or book an appointment. The choice to keep your medical records private is completely down to you; all you need do is inform your GP of your choice, which you can do simply by writing a letter or dropping a form into your surgery.

To make things more straightforward, medConfidential is providing both a form and a letter for you to use. You can use either one of them. Click on one of the links below to download a copy. Print it off, fill in your details, sign it and send it to your GP or drop it into the surgery reception for their attention:

Opt out form (PDF)

Please do take a few moments to e-mail this PDF to your family, friends and colleagues, or send them the link to our download page – www.medconfidential.org/how-to-opt-out – or share it on social media. You might even print off copies of the form (it conveniently prints double-sided and folds to fit in a DL envelope) to give to others who may not have heard about what’s going to happen to their medical records, and won’t know what they can do.


Opt out letter (MS Word)

Opting out will not affect the care you receive and you can change your mind at any point and opt back in if you like. If you have any specific concerns, we recommend you speak with your GP.

As you will see from the letter, there are TWO codes that your doctor will need to add to your record – one to prevent identifiable information being uploaded from your GP practice and one to stop the Health and Social Care Information Centre from passing on identifiable information about you that it gathers from anywhere else, e.g. hospital records, clinics or testing laboratories.

Remember, the choice is yours. You don’t need to justify it but if you want to keep your medical records private and confidential you do need to act now.


See also: http://medconfidential.org/

See also: http://www.dailymail.co.uk/news/article-2552651/GPs-revolt-patient-records-Growing-anger-NHS-plan-harvest-private-data.html


Don't delay if you wish to protect your privacy - I believe the process of copying patient data starts in earnest next month -  March 2014

Offline Tobes

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #2 on: February 10, 2014, 03:02:24 PM »
Thanks for posting this Geoff - very timely.

I received my less-than-effective excuse for communication a little while ago and its been on my to-do list to raise it on TS - so big thanks to Mr Reid for covering all angles of this off.

Make no mistake, the security of your records, allied with the potential ease with which they could be accessed by either hackers or commercial data-miners - or, post Snowden, by any number of semi-official snoopers on fishing expeditions, means that this is an unnecessary and worrying change being foisted upon a largely unaware population.

I thought we'd changed government....?!

I do not agree with what you have to say, but I'll defend to the death your right to say it - [attributed to] Voltaire... 'Entia non sunt multiplicanda praeter necessita' - William of Occam.... 'You have a right to feel offended, but just cos you are offended doesn't mean you are right'

Offline Tobes

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #3 on: February 10, 2014, 03:11:10 PM »
Remember another important aspect to this change.

Whilst the vast majority of the population are fighting to keep the concept of the NHS intact, those who wish to foist a privatised system requiring medical insurance seem to be making headway under the current administration.

A system which demands insurance - allied with a database of comprehensively accessible data should give everyone serious pause for thought...

- have you ever told your doctor you smoked - even if it was years ago?
- ever been told you were overweight?
- ever been treated for a serious disease...?

... let alone the issues of personal privacy which you might wish kept confidential, such as abortion, stds, treatment for depression of mental illness or past drug use...

Big Brother is back - he's just changed the colour of his t-shirt from red to blue....
I do not agree with what you have to say, but I'll defend to the death your right to say it - [attributed to] Voltaire... 'Entia non sunt multiplicanda praeter necessita' - William of Occam.... 'You have a right to feel offended, but just cos you are offended doesn't mean you are right'

Offline DavidPayne

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #4 on: February 10, 2014, 06:46:46 PM »
Anyone know if this is as sly as it might be, that is, have they (re)introduced it so as to null-and-void prior arrangements. when 'The Spine' was first proposed, though it took three hand-delivered letters from me to produce a result, I got my GP's assurance that my details would not be uploaded. Do we have to do it again? I'll spit blood if we do.

Offline Tobes

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #5 on: February 10, 2014, 06:57:59 PM »
Quote
Anyone know if this is as sly as it might be, that is, have they (re)introduced it so as to null-and-void prior arrangements. when 'The Spine' was first proposed, though it took three hand-delivered letters from me to produce a result, I got my GP's assurance that my details would not be uploaded. Do we have to do it again? I'll spit blood if we do.

Thats a very good question David.

if you've previously opted out and not yet 'done it again', could you call your GP and check with them whether a re-affirmation that you want out is required?

I suspect a lot of people - including journalists and polticians - might be very interested in your findings...
I do not agree with what you have to say, but I'll defend to the death your right to say it - [attributed to] Voltaire... 'Entia non sunt multiplicanda praeter necessita' - William of Occam.... 'You have a right to feel offended, but just cos you are offended doesn't mean you are right'

Offline Geoff Reid

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #6 on: February 10, 2014, 07:05:01 PM »
Anyone know if this is as sly as it might be, that is, have they (re)introduced it so as to null-and-void prior arrangements. when 'The Spine' was first proposed, though it took three hand-delivered letters from me to produce a result, I got my GP's assurance that my details would not be uploaded. Do we have to do it again? I'll spit blood if we do.

Hi Dave :)

The Health and Social Care Act 2012, which came into force on April 1st 2013, made some fundamental changes to the structure of the NHS. The ones that are of particular interest here are:

1)    The creation of the ‘NHS Commissioning Board’

2)    The creation of ‘Clinical Commissioning Groups’

3)    New powers that change the ’Regulation of health care and associated professions’ into the ‘Regulation of health professions, social workers, other care workers etc’ – in other words, the creation of a new over-arching Health and Social Care Service

4)    And finally, the whole of Part 9 of the Act. 

Part 9 creates another new body: ‘The Health and Social Care Information Centre’ and also sets out various powers and duties relating to the establishment of information systems (e.g. databases) and the central collection and dissemination of health and social care information about every individual in England.


Given that our records will be, (unless we opt out), harvested by the Health & Social Care Information Centre using new powers under the new (2012) Act of Parliament I would say yes, you need to opt out again if you wish your records to remain confidential.

My understanding is that data can/will still be harvested, but it will be stripped of any identifying details before leaving your surgery.

Powers exist within the Act to harvest/obtain all your data in certain (specified) circumstances, e.g, a public health emergency such as an ebola virus outbreak or beubonic plague.

I expect at some point the Act will be politically/legally re-interpreted to mean anything politicians, (who are repeatedly lobbied and rewarded by the insurance and health industry) want it to mean.

Bastards.

Offline moley

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #7 on: February 10, 2014, 08:20:44 PM »
This one really is the proverbial double edged sword.

Not all my relatives are particularly well educated.

In the past I've been able to head off one or two problems with my own potential medication by being clued up enough to point out issues before they happened...

On the other hand, if you're trying to help an elderly relative understand medical issues, and you've no idea what medication they are actually on and how it may be interfered with by the stuff provided by the hospital (or how to help them explain what symptoms they have had in the past), joining up medical records actually seems quite desirable.

So I don't have a problem with records being joined up AS LONG AS suitable privacy safeguards were in place.

Even then there is a possibility that the benefits might outweigh the risks...

For me it's a really tricky one.

Moley

Offline DavidPayne

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #8 on: February 10, 2014, 08:45:39 PM »
Not all my relatives are particularly well educated.

So I don't have a problem with records being joined up as long as suitable privacy safeguards were in place.

Oh if only education were enough to make the difference! Trouble is the machinery of Establishment is the veritable epitome of automaton intent and I have come to believe that it will take civil disobedience of a scale to invite martial law to effect meaningful change. As for 'safeguards', look at Barclays in the news today for the latest spectacle of hopeless incompetence in the matter of personal data. If ever there could be pressure enough to determine integrity then the abject ignominy attaching to the conduct of the Banking Industry would do it, reviled with a hatred that simply cannot find an adequate way to express itself ....but alas not. With every passing day in my ageing life, I trust authority less. Excuse me Moley, but as you might sense, though a real 'tryer', I am next to inconsolable.

Offline Alligator

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #9 on: February 10, 2014, 09:10:46 PM »
Thanks for posting this Geoff.  I recall the leaflet and must admit that when I saw it I put it to one side with the intention of reading it later, only to find that Mrs Alligator had recycled it.

I think I will assume that a re-affirmation of the opt out is required, even if not, it's better safe than sorry.

One thing I do recall from the last time round was that you needed to do this in writing and be specific about what you were stating. i.e. which database, or the project name, you were seeking to opt out of.

Does anyone know if there is any guidance on what language to use when contacting your Dr this time around? 

I think it would be a crying shame if people who thought they'd opted out were, in some way, opted back in due to not using the correct terminology or a convenient interpretation of what your letter meant.  After all, many of us recall Anne Snelgrove and her cronies convenient interpretation of the word 'voluntary' when trying to coerce us into their Orwellian world.

Offline Muggins

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #10 on: February 11, 2014, 10:17:16 AM »
Is there two issues going on then?  A year or so ago the NHS wanted to put our details somewhere, that meant wherever you were, a Doc or hospital could pick up your records on line and treat you accordingly - which I thought was a good idea and if we have the technology why not use it for the benefit of patients.

Is this another do then?

At the moment I have a lovely rosy glow about the capabilities and qualities of the NHS. 
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Offline Tobes

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #11 on: February 11, 2014, 11:36:22 AM »
Quote
Is there two issues going on then?  A year or so ago the NHS wanted to put our details somewhere, that meant wherever you were, a Doc or hospital could pick up your records on line and treat you accordingly - which I thought was a good idea and if we have the technology why not use it for the benefit of patients.

Alas, the road to embuggerment is generally paved with good intentions.

At the moment, your medical records are a mixture of paper copies, with (as I understand it) a certain amount also stored on your local practice's computer (subject to the usual Data Protection guidelines). A doctor can ALREADY treat you to a certain extent online - if its your own GP they have the necessary data. If its not your GP, they are limited in what they can perscribe, and require you to be honest about your medical past. But don't most people prefer to be seen face to face (and ought we not to encourage people to do that for a proper diagnosis anyway?)

If you keel over, get run over etc., whoever's treating you will contact you surgery if they need to, to check your medical history. To do this, they'll need to know your name and the name of your GP and their location (and that surgery will presumably need to be open or at least manned).

1. The NHS online 'spine' might be useful if you have a serious pre-existing medical condition or some kind of allergy. But for most of us, it will be a complete irrelevance to any emergency care. Emergeancy procedure is about the here and now - not that you broke your leg in 1982 or were treated for piles and depression a couple of years ago.
2. If you are an unfortunate with a serious pre existing medical condition, and you're not wearing a bracelet or some other identifier, the shared records will only be of use if you've conveniently taken ill but are still able to identify yourself or have someone with you who can (or you're carrying your ID card... ;) )
3. The most value in terms of detail consultation about you and your medical history will always be between fellow professionals over the phone.

I too love the NHS. Being sceptical about this is not to attack the NHS, mind you Mugs. This is a political move, made and sponsored by politicians. NHS workers I know are opting out of this - what does that tell you?
I do not agree with what you have to say, but I'll defend to the death your right to say it - [attributed to] Voltaire... 'Entia non sunt multiplicanda praeter necessita' - William of Occam.... 'You have a right to feel offended, but just cos you are offended doesn't mean you are right'

Offline Muggins

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #12 on: February 11, 2014, 04:44:29 PM »
I think, say we were on holiday and we had a problem, that access to records would be vital and the more instant the better, ring a surgery out of hours and well, you might as well ring M&S for all the real information another could get their hands on. 

The only thing that as let us down over the past two months is the admin, everyone else in the health service seems to work all hours God sends, but the admin are the same everywhere.

So ring on a Sunday and you won't be able to speak to anyone, but if the records were up online accessible by password etc. to the Doctors, there they would be. I don't agree that past records aren't important to anything that might happen whilst you are away. The urgency might not be an accident, the patient might not be awake, or not thinking straight to give the right answers.
 
It one of the advances that modern science can bring surely?

I don't mind them using my details for research - say like there are 15 fat ladies on Penhill, so long as they don't name me. If it buys another couple of nurses I don't even mid them selling the blessed data, so long as it's not used in the way you say.

So how can we have the one without the other?? 

 
Oi! Listen mush. Old eyes, remember? I’ve been around the block a few times. More than a few. They’ve knocked down the blocks I’ve been around and rebuilt them as bigger blocks. Super blocks. And I’ve been round them as well.  The Doctor (Night Terrors)

Offline Geoff Reid

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #13 on: February 12, 2014, 12:11:53 AM »
Unless you previously submitted an opt-out letter to you GP then it is likely that your 'Summary Care' records have already been uploaded to the spine which *should* make the 'I'm on holiday and...' argument irrelevent for those patients already opted-in to the summary care record upload. I cannot guarantee that the system works or is reliable though, I won't be able to test it either because I and my family opted out of that upload.  That said, I very much doubt that there is anything in my summary care record which would. (provided medical staff are doing their jobs properly), affect any emergency care I might need. e.g, they'd follow normal procedures for blood transfusions etc....

You have a few days to decide one way or the other.

It's a personal choice and those who opt out now can always opt in later on. Those who don't opt out will have their data harvested and opting out after the fact would be like baling the Titanic out with a sieve imho.....

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Offline Tobes

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #14 on: February 12, 2014, 12:34:21 PM »
No single organisation should be better prepared and more aware of the implications of breaches of data security and confidentiality than the police - and its also safe to say that they also handle less in terms of volume than the NHS. Therefore, the following ought to make sober reading, when considering the implications of the NHS Spine plan (remember, these are just the recorded incidents...):

Quote
According to figures obtained by the Press Association under the Freedom of Information Act there were 2,031 breaches of the Data Protection Act across the 35 forces in England and Wales that responded between January 2009 and October 2013.

Breaches could include officers or staff accessing confidential and personal information or running unauthorised background checks and nationwide more than 100 staff were sacked and nearly 200 resigned as a result.
I do not agree with what you have to say, but I'll defend to the death your right to say it - [attributed to] Voltaire... 'Entia non sunt multiplicanda praeter necessita' - William of Occam.... 'You have a right to feel offended, but just cos you are offended doesn't mean you are right'

Offline Geoff Reid

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #15 on: February 12, 2014, 11:18:05 PM »
Continuing with the Titanic theme.....I reckon those figures are probably just the tip of the iceberg.

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Offline Geoff Reid

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #16 on: February 20, 2014, 01:06:20 PM »

And.....

...NHS England have announced that Care.data, (the plan to upload our medical records to a central database) is being posponed for 6 months. 


See Also:

[1] In their coverage of the pause, the Daily Mail, the Independent, the Telegraph and the Guardian all credited 38 Degrees members for keeping up the pressure on NHS England.
The Daily Mail, NHS delays plan to harvest your details: Victory for the Mail as database is shelved for six months: http://www.dailymail.co.uk/news/article-2562296/Controversial-plan-share-medical-records-NHS-hold-six-months.html

The Independent, Victory for privacy as NHS database is delayed:  http://www.independent.co.uk/life-style/health-and-families/health-news/victory-for-privacy-as-nhs-database-is-delayed-9137136.html


The Telegraph, Patients should be warned before NHS shares medical records, doctors say:   http://www.telegraph.co.uk/health/healthnews/10646151/Patients-should-be-warned-before-NHS-shares-medical-records-doctors-say.html


The Guardian, NHS in England delays sharing of medical records:  http://www.theguardian.com/society/2014/feb/18/nhs-delays-sharing-medical-records-care-data


[2] 38 Degrees blog, NHS Care.data: 38 Degrees members vote to opt-out:  http://blog.38degrees.org.uk/2014/02/18/nhs-care-data-38-degrees-members-vote-to-opt-out/


[3] 38 Degrees blog, NHS Care.data: Our meeting with NHS England yesterday: http://blog.38degrees.org.uk/2014/02/19/nhs-care-data-our-meeting-with-nhs-england-yesterday/


[4] Sum of Us: http://action.sumofus.org/a/nhs-patient-corporations/Medconfidential: http://medconfidential.org/


Offline Muggins

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Re: NHS SPine: 'The Big Opt Out' campaign gaining momentum
« Reply #17 on: February 20, 2014, 03:55:49 PM »
I haven't read all the stuff on this subject, but have managed to catch several discussion on the tele about it.

Whilst Cameron's Crew might WANT to sell it off, it seems that the NHS want this information -so much - for helping them with future research etc. - for the right reasons, that Cameron's might have to take a back step in it.  i.e. somehow make solid robust agreement that this will NOT happen to enable the NHS to use the data for the benefit of us all.

Either that or so many people will/are opting out that the data available is no use anyway.

I think that the links you show, shows that either they will have to do a U turn, or it was never meant for sell off in the first place.
Oi! Listen mush. Old eyes, remember? I’ve been around the block a few times. More than a few. They’ve knocked down the blocks I’ve been around and rebuilt them as bigger blocks. Super blocks. And I’ve been round them as well.  The Doctor (Night Terrors)