NHS Care-data

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Caveman
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NHS Care-data

Post by Caveman »

Has anyone received a NHS care-data leaflet? I haven't, but some of my friends have.

http://www.england.nhs.uk/ourwork/tsd/care-data/
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lizwing
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Re: NHS Care-data

Post by lizwing »

Yes we have I was going to ask how others felt about it.
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Les

Re: NHS Care-data

Post by Les »

Yes, mine came in the post at lunchtime. I do not have any problem with it.
Mayfield
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Re: NHS Care-data

Post by Mayfield »

What you tell or confide in your Doctor has always been confidential, will this alter?
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piwacket
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Re: NHS Care-data

Post by piwacket »

I haven't received this leaflet yet, so will wait until I have to comment more fully.

On the face of what the website says it sounds a very laudable idea - whether it would actually work successfully in practice (literally!) I would be very dubious... even within the surgery I attend patients' notes don't seem to be used for historical reference :shrug1:
and as Mayfield says, what about Patient Confidentiality?
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Voiceoftreason?
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Re: NHS Care-data

Post by Voiceoftreason? »

As I'm sure C8 will confirm, there is no such thing as a secure IT system.

I Don't have any faith in any claims of confidentiality either. As soon as a comment leaves your mouth, it takes on a life of its own. The NHS would be better off making sure their information is correct first, both given and received. IMHO it pretty poor communications-wise.
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lizwing
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Re: NHS Care-data

Post by lizwing »

I'm not sure why but I don't like the idea.
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wendy

Re: NHS Care-data

Post by wendy »

I will be opting out. I do not want my confidential data available for sale to anyone with a budget.
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piwacket
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Re: NHS Care-data

Post by piwacket »

I feel the same! The continuing chaos with their IT set up doesn't fill me with confidence.
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lizwing
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Re: NHS Care-data

Post by lizwing »

I also wonder whether people with certain ailments will be targeted for unsolicited advertising junk mail. If you have arthritis will you be inundated with fliers for stair lifts for instance. How would you feel if the same process was being proposed for bank accounts ?
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dave m
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Re: NHS Care-data

Post by dave m »

the information is anonymised and there is no suggestion that it will be sold on (which would be illegal under data protection .)

the idea is to develop data on treatments and cures.

Do you object to benefiting from the information gathered in this way?
Mayfield
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Re: NHS Care-data

Post by Mayfield »

No, but where does 'benefitting from information in this way' sit with patient /Doctor confidentiality ? The leaflet doesn't make it clear...
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Voiceoftreason?
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Re: NHS Care-data

Post by Voiceoftreason? »

Dave - which part of the DPA are you referring to please? And the data already exists in the patient data bases, at least in terms of age,name,address,symptoms,diagnosis,treatments,outcomes,GP details yadda yadda, so what is this information gathering actually adding?
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dave m
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Re: NHS Care-data

Post by dave m »

from a brief look at it, the age, sex, postcode and NHS number will be related to the medication and symptoms of the patient.
AFAIk "personal comments" on the records won't.

You can argue that if you spent a fair bit of time and effort you could find a female 25 year old diabetic with one leg who lives at RG1 1XX by correlating various other databases, but it's a lot of work.

I have been in a GP's appointment where someone who looks about 12 is sitting in as a trainee and have always agreed (for the benefit of all) that I don't mind them being there.
Perhaps if I had acquired ann embarrassing itch after a night out, I wouldn't be too keen, but I have a couple of chronic (in the medical sense) conditions and anything that can help me or people after I am long gone is ok by me.

The DPA reference (embarrassing as I just did a refresher) is that the info is statistical and anonymous and is ok to pass on but if it was liable to identify the data subject, then it can't be passed on by the data controller
Caveman
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Re: NHS Care-data

Post by Caveman »

I'm too old to worry and probably won't opt out. One of the advantages is that should I end up in some hospital in the middle of nowhere immediate access to my medical records might possibly help save my life. That said I do think the following points cannot be ignored:

* UK Gov Plc's track record on IT projects and data security isn't great;
* the mass of data being talked about will be valuable, and a target for hackers and others;
* Future mission creep such as letting approved researchers have access to genuinely anonymised health data, followed by banks, insurance companies and the like getting easier access to our health records, without requiring our explicit consent or even our knowledge;
* once the genie is out of the bottle, and the data is out there, it can't be put back in.

Just a thought.
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lizwing
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Re: NHS Care-data

Post by lizwing »

That's what worries me,too.
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piwacket
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Re: NHS Care-data

Post by piwacket »

lizwing wrote:I also wonder whether people with certain ailments will be targeted for unsolicited advertising junk mail. If you have arthritis will you be inundated with fliers for stair lifts for instance. How would you feel if the same process was being proposed for bank accounts ?
From my experience that certainly applies! Over the last few years I have received unsolicited letters to the effect ''We note that you are prescribed XYZ, so would you like to join this ABC medicine trial'' No! I would not! Or invitation to receive some sort of self-assessment gadget for this or that Cancer - No way!

So where do that lot get their info :whistle1: when a (unkown to me) GP at the surgery tries to prescribe me something that is recorded on my notes that I'm allergic to - but of course they haven't even read them!(eg Penicillin) and it been me who's realised the error and has to point it out or worse, return and get something else.
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lizwing
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Re: NHS Care-data

Post by lizwing »

Can we really believe that this data won't be sold to raise money for the NHS ? Or accessed by insurance companies?
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Voiceoftreason?
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Re: NHS Care-data

Post by Voiceoftreason? »

Indeed - Or, Liz, simply hacked?
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dave m
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Re: NHS Care-data

Post by dave m »

if the stuff held on the computer is as they have said, i.e. anonymous, then if it could be hacked (or sold) it isn't of use to identify an individual without extraordinary attention to detail.
That would be against the law, and it's easier to hack your doctor's surgery in the first place, where your name is stored alongside the data. And just as illegal.

the current DPA prevents your identity and medical records being passed to drug and insurance companies without your permission.
My mother suffered from osteoporosis and received mail shots asking about screening. It turned out to have been the osteoporosis society who'd sold the details. Not the NHS
she'd omitted to tick a box about passing on details.
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piwacket
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Re: NHS Care-data

Post by piwacket »

dave m wrote:if the stuff held on the computer is as they have said, i.e. anonymous, then if it could be hacked (or sold) it isn't of use to identify an individual without extraordinary attention to detail.
That would be against the law,
I don't doubt there'd be people for a certain payment would be quite willing to find the detail ....And what makes anyone think that it ''being against the law'' would bother them? :shrug1:
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N Tropy

Re: NHS Care-data

Post by N Tropy »

Of course there's a risk that data may fall into the 'wrong' hands, but there's also a clear benefit to collecting data. If we all agree to share information, that seems better than none or some of us doing it. Maybe it should be a condition of NHS treatment - you want our help, you help us.
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piwacket
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Re: NHS Care-data

Post by piwacket »

N Tropy wrote: Maybe it should be a condition of NHS treatment - you want our help, you help us.
And where does that put paying NI ?
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N Tropy

Re: NHS Care-data

Post by N Tropy »

piwacket wrote:
N Tropy wrote: Maybe it should be a condition of NHS treatment - you want our help, you help us.
And where does that put paying NI ?
Paying NI isn't a condition of NHS treatment. But I agree it's a tricky area, ideally I'd like complete privacy too, but on balance I think sharing data is better.
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Voiceoftreason?
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Re: NHS Care-data

Post by Voiceoftreason? »

Sharing personal data is and will remain dangerous, in a world where the unscrupulous, mad or just plain bad, can use it against you. It's nieve to presume everyone has altruistic tendencies towards the sharing - after all how many dodgy websites or begging emails are there floating around? And you would willingly put your personal data into that arena? Pffft - fat chance!
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wendy

Re: NHS Care-data

Post by wendy »

http://www.theguardian.com/society/2014 ... panies-buy

the guardian certainly suggests the data is for sale.
cnb
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Re: NHS Care-data

Post by cnb »

Like N Tropy, I think that if we're going to have a socialised healthcare system then allowing data obtained through your own use of the service to be shared with the intention of improving the care of others seems entirely reasonable.

I'm fairly sure, however, that 80-90% of that benefit to others could be gained using fairly well anonymised data, and that's where my concerns about this proposal lie - how anonymised will it actually be. It's not really clear from the press reports exactly what level of detail will be shared, and without that any discussion about what might happen as a result of that sharing is pure speculation. Perhaps the leaflet is clearer, but I haven't received it yet.


I would like to clarify the financial side of the proposal, though, on which the major points are clear:

There is no suggestion that the data will be sold at a price which will provide a meaningful income stream to the NHS, that's utter fantasy. The average commercial value of individual health records for any purpose other than healthcare-related research - even with all the identifiable detail - is very small in the UK, primarily because we have the NHS. With even a basic level of anonymisation, the value becomes tiny, and properly anonymised it would be almost worthless.
The expectation is that the data will be analysed to look for patterns which show problems or inefficiencies, and its fixing those problems and inefficiencies that will save the NHS money.
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Voiceoftreason?
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Re: NHS Care-data

Post by Voiceoftreason? »

cnb - the guardian article says age, gender, ethnicity and NI number. That's already way too much info in the ether about me thanks!
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lizwing
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Re: NHS Care-data

Post by lizwing »

The danger is that people have to actually write to their GP to say they don't want to do this and a lot won't bother or will forget. We're having a bit of a disagreement here because I feel uncomfortable with this idea but my husband can't see anything wrong with it.
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cnb
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Re: NHS Care-data

Post by cnb »

Voiceoftreason? wrote:cnb - the guardian article says age, gender, ethnicity and NI number. That's already way too much info in the ether about me thanks!
But without your name, address, or some other peice of personal information the data isn't 'about you' - it's about a non-specific person of that age, gender and ethnicity. That's my point about anonymity - how difficult will it be for someone to associate the NHS data with other sources to create something that is actually identifiable?
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Voiceoftreason?
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Re: NHS Care-data

Post by Voiceoftreason? »

Sorry, that should have read NHS numbers, date of birth, postcode, ethnicity and gender. C8 could probably tell you that a reasonable sophisticated programme could cross-check several databases such as electoral roll etc, and soon blow all claims of 'anonimity' wide open.
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cnb
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Re: NHS Care-data

Post by cnb »

I'm well aware of what's possible with technology. What I'm lacking is clarity on exactly what data is planned to be shared (what do they mean by 'postcode' for example? The full postcode would make association easy in many cases, whereas just the out code would be sufficiently vague to be of little use for that purpose, but fulfil the need to spot patterns by geography), and how widely available some of that data already is (I don't use the NHS much, so I don't really know what the NHS number is used for, and therefore how easy it is to associate it with other data).
The key here is probably the NHS number, which it doesn't seem necessary to include in anonymised data, but as I say I don't know enough about its current use to be sure how risky it is.
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OLDMAN
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Re: NHS Care-data

Post by OLDMAN »

This cropped up at a patient group meeting I attended at my doctors the other evening

Caveman has it right - it’s a mainly your information that can then be used if you fall ill anywhere else

Secondly it’s a survey of general information that can help the NHS plan for the future

But as pointed out, and we thought the same at the meeting – its open to hacking / abuse from that

As for the selling etc that is illegal in this case so it would be chancing your job etc to do it
And what’s to stop a receptionist or someone just selling your data from your doctors know?
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Re: NHS Care-data

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piwacket
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Re: NHS Care-data

Post by piwacket »

Precisely!

I've now received the said leaflet, and read it thoroughly. Despite all the (professionally) constructed assurances I'm certainly not convinced that the data will be secure, nor that knowing what ailments I've ever suffered from or been treated for, will add anything to anyone else's well-being. We are all different with different reactions to medications - this sounds to me more like an Agenda to try to develop a ''Cure-all''... rather like Statins for example, to which I react very badly... as I do various other things.

And as for the statement about advising your surgery to make a note on your medical records of your wishes - as said above, I'd have little faith in that move. Having attended the same surgery for nearly 40 years, through various medical probems and acknowledged contra-indications - reference is rarely made to my Medical records now - why should I believe that's suddenly going to change?
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