NO2ID

My G.P proudly told me my next appointment with a hospital consultant was by "choose and book". My password is a 5 and 4 letter word, seen in any dictionary, all lower case. I have tried to change it but the NHS claims that Macs are a mystery, even if you use I.E.

I suspect this is wide open and fear that my whole medical record is now on this profoundly flakey "data spine". Help!

Mark.

According to plan.

So that means your password is "chose" and "book" (or "spine" and "data")

Not sure what you mean.

Edit: numeracy deserted me, especially for the number of letters in "choose"

I thought you could opt out of the NHS electronic database?

You can - see http://www.nhsconfidentiality.org/?page_id=23

We've been working quietly on this for a while now. Expect a lot more noise over the next week or so, leading up to an official announcement of TheBigOptOut on the 29th.

Editable fields / regions (on the Word doc and the PDF) would make it even easier to deal with. ATM you have to transcribe the contents of the PDF into a doc in order to add your details, or print it off and add the details by hand, which makes the whole PDF a bit pointless. With editable fields the the only bits you can (read: need to) change are the personal details at which point you can save and print as much as you like...

Is this for Scottish citizens as well? I presume it is as the spine wouldn't be much good if it suddenly stopped at the 'border'

Phil



Tell us more - please! Are we going to be given the option to opt-out? If so, that's a magnificent achievement! Such a precedent would show that people REALLY ARE unhappy about government keeping files on us all and that must bode well for us to have the right to 'opt-out' of any national ID database.

If sufficient numbers of people opt-out of any database, it's doomed.

We live in hope.

Stu

Can I sign an opt out on behalf of my children.

Can I point out to those who download this that there appears to be a slight mistake in the letter which needs to be corrected before printing, www.thebigoptout.org does not seem to work on my computer, however www.thebigoptout.com does.

Hi Ricardo

Things are different in Scotland. See here.

I visited my Edinburgh GP surgery yesterday, and found it very straightforward to opt out of (apparently) pretty well everything! Thus:

- I opted out of the Emergency Care Summary.

- I had code 93C1 entered into my GP's record, indicating "Refused consent to upload to local electronic record".

- I had code 93C3 entered into my GP's record, indicating "Refused consent for upload to national shared electronic record".

I feel better already!

Having read about the security problems with the NHS database, I asked my doctor about his plans to inform patients and about opting out of the transfer last week. He replied that I should be aware that this might oblige him to remove me from his patient list. Is this legal?

PS As a recent local authority employee who has transferred from the charity sector, I am astonished everyday at the laissez faire way data is exchanged between agencies with no agreements, no consents. Things were certainly much tighter in the charities I worked with before because people feared the fines that might be imposed - not a problem, I imagine, in public service circles. Call me an old cynic, but I would imagine the NHS will sit on the public sector end of the continuum when it comes to compliance.

"He replied that I should be aware that this might oblige him to remove me from his patient list."

Oh. Actually, I've got no problem with this.

As long as I get my portion of the NHS budget (minus a bit for A&E, say) back to spend on private healthcover.

You can not opt-out of the national database and your data can be uploaded without your consent. The only way you can prevent it is if you dont tell the GP/nurse.

The BMA are against the idea of implied consent, but considering Connecting for health has made it clear that in most cases data must go via NCRS and their will be no alternitive for GPs and the doc/nurse can do it without asking you (I can supply emails backing up what I have said), then it seems we are buggered.

It seems to me, it will only be after about three leaks concerning which M.P has, say, HIV that our "representatives" will take notice. At that stage, it will be far too late. All our details will be out there.

My point about feeble passwords is mainly a side-issue given the huge number of "authorised" users.

Mark.

Only true if you accept the DoH position at face value. Since it is wrong in law and professional ethics, it is relying on bluster and administrative compliance, both of which are more powerful weapons than they should be, but by no means invincible.

It is possible for your data to be uplioaded without your consent, and it probably will be, if you do nothing (which is one reason the DoH is hinting at the top of its voice that it is futile try), but that does not mean either that it is permissible or inevitable.

I'd like to know that too...

If anybody can knock up an A4 leaflet similar to the Renew For Freedom one, about the whole NHS thing (so that I don't have to breach copyright, by reprinting certain Grauniad articles), that would be great. I fancy another door-to-door mission.

You wont breach copyright if you leave the Grauniad details on it.
You have to make financial gain, and pretend ( or intimate) it's your work.
Also it's already in the public domain.
I can't see the paper taking any action over it - if you acknowledge
that they are the source - they'll prolly see it as unpaid advertising.


[Moderation & legal note: That's rubbish. The paper is unlikely to take action unless the use is unfair, but they would be wholly within their rights to. They might indeed see it as advertising, but you would be unwise to rely on that. If you do it "to such an extent as to affect prejudicially the owner of the copyright," knowing or having reason to believe that it is an infringement, then you don't just infringe, but you commit a criminal offence. - Guy Herbert]

There's something in the pipeline...

Carpe Noctum,

We have had a letter drafted by a GP that will (for now) allow you to put a stop on your GP records being automatically uploaded to the 'spine':

http://www.nhsconfidentiality.org/?page_id=23

Please note: this will not prevent your records from being uploaded from hospitals, or by other bits of the NHS - but we are working on appropriate mechanisms for those, too.

The battle between (elements of) the BMA and Connecting for Health over opt-in/opt-out is very much ongoing - but you can be sure that if you do nothing, your records will be uploaded.

As with every action that NO2ID recommends, we are proceeding in a very careful and deliberate fashion. We want people to be absolutely aware of what they are doing, and of any potential consequences. The 93C3 stop order does not prevent you from receiving care from your GP - it merely ensures that your electronic records are kept local (i.e. on your GP practice's systems).

Phil

P.S. we are waiting for TheBigOptOut to propagate across DNS, which it should have done in time for the official launch later this week.

Have just come back from my Dr's. Can report the following.
1. The NHS computer does not work! - it is full of problems.
2. The Computer at the Doctors cannot divulge information to for instance a hospital, without your consent - if it did so it would be illegal (kind a nulifies the claimed benefits)(The only people allowed to lift your medical records are the police)
3. A receptionist cannot add to your medical records or alter them, but they are entitled to add comments about phone calls, if they feel you are abusive etc. etc.
4. although they are not allowed to divulge Dr's records, if the doctors refer you to a physiotherapist for arguement sake, the Physio gets a breakdown of all medical records, ie suicide, depression, migrane etc. etc. etc. which sort of contradicts point 2.
5. Some of the major points which are of note.
There are details of your ethnic category, weight, O/E -height, body mass, ideal weight, BP, smoking, alcohol intake, diet, exercise.

I am bloody furious about the info which has just gone out from my Dr's (Which is thought not to be a problem)
and SERIOUSLY recommend everybody ask for a copy of their patient summary as this is given out to MANY PEOPLE!!!.

I am a GP and would just put one little caveat on the above.

When I refer to a physio I include all relevant information. Clearly an overdose four years ago has no relevance to your bad back so that does not go in. Blood pressure and its current treatment may be relevant so it would go in. I regard this as good practice (well I would, wouldn't I) and is probably the way the majority of people do it.

It is tempting to use automated tools to generate the referral but we have generally found they include irrelevant stuff and don't include the usefull.

It is true that current GP systems don't allow the hospital to go fishing but there is some very powerfull software that does allow data extraction. This is the sort of software that will become standard to suck data on to the national 'spine'

Already data has been sent for a survey
http://www.nhsconfidentiality.org/?p=27
there is also an extraction of non anonymous data for a diabetes audit. This is then matched against hosptial data. This is running now (although my practice said no)
http://www.icservices.nhs.uk/ncasp/page ... lt-new.asp

Thanks for all your comments.

I've been sending out "the word" through all my usual channels, but so far, I think this medical records nonsense would be a good thing to distribute warnings about door-to-door, since far more than the cards/NIR issue, this has immediately infuriated every single person I have spoken to about it, without question.

As something of a side-issue (though equally important), I think publicising it would serve to draw more peoples' attention to wider surveillance issues, and further prime their anger, as it were.

As far as NHS computers being a crock of shit, sometime around 7 years ago, I briefly accepted a temporary job working in the medical records department of a psychiatric hospital, and was truly amazed, firstly at the fact that the admissions/discharges/basic case details information was stored on two concurrent databases (on two different operating systems) which were not synchronised (meaning I not infrequently had CPNs phoning me asking why they had been advised to visit a patient who was dead, for instance) and thus horribly inaccurate in places; and secondly the amount of sensitive information I theoretically had access to as a teenager with minimal training, paid just above the minimum wage.

I treated my job with the respect it deserved (to date, the greatest responsibility I have ever wielded at work) and believed I did it well and probably wouldn't have got it in the first place without excellent references etc, but I can't imagine the situation will be massively different with the NIR. Ie: at least some of the admin jobs will be carried out by poorly paid individuals such as myself, many of them probably considerably less honest than me.