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DEATH

Caredata

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I got a leaflet through the letterbox about this today, probably will be a topic of discussion in the coming weeks, you can opt out.

http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx

A doctor has setup this website about it:

http://www.care-data.info

You need to contact your GP if you don't want all your medical info to be "shared", data extractions will start in March 2014.

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I filled in the form to opt out of the "Summary Care Record".

Looks as though quite a few people opted out of that, this has a slightly different name.

I'll write to my GP to ask them to process the opt out and confirm.

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If you leave England and live elsewhere does the English NHS retain your records? Who do you write to to opt out if you are not registered with an English GP?

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If you leave England and live elsewhere does the English NHS retain your records? Who do you write to to opt out if you are not registered with an English GP?

If you're outside the ambit of the NHS, I guess the last GP practice you went to would archive your records.

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Yes, got a leaflet through my letter box today - more insignificant junk mail to chuck away?

Better read it first - especially the bit about sharing information 'with approved researchers and organisations outside the NHS'.

Not sure who is 'approved' - will they let us know at the time? :rolleyes:

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Yes, got a leaflet through my letter box today - more insignificant junk mail to chuck away?

Better read it first - especially the bit about sharing information 'with approved researchers and organisations outside the NHS'.

Not sure who is 'approved' - will they let us know at the time? :rolleyes:

Apologies for reading the antichrist, the BBC, but there was a very good rated top comment on what the ‘research’ organisations will be:

Once the insurance companies get their hands on the data absolutely nobody will be paid out ever again.

"Sorry old chap. You didn't declare the boil on your backside in 1983"

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Dropped my form in today

I've opted out too. Or at least I hope I have. The wording on the form was really confusing though - not sure if it's because I was half asleep at the time! It seemed to be a locally made form and not a standardised one as I can't find a similar one online.

"Do you not want to not opt out of sharing your data?"

Yes [ ] No [ ]

and then what appeared to be a very similar question underneath. I think I might go back and make certain.

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GP's could be fined if too many of their patients opt out.

Well I think it's about time we were all just fined for staying alive, breathing, soaking up oxygen. you know - just fined.

dry.gif

http://www.gponline....t-data-sharing/

its called taxes...the other inevitability is death...and the taxman hates that to happen.

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Been to the doctor's today asked about opting out. Helpful receptionist gave me a form to fill in, had conversation about the issue it seems they are aware it's 'not right,' and due to how it's been promoted few will be aware of it.

Came out with a handful of forms she'd photocopied for me to give out at a meeting tomorrow.

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BBC website: Giant patient records database 'should be delayed'.

A giant database, Care.data, is being set up with anonymised records to help aid medical research and the monitoring of performance...

There is a proposal - to be discussed next month - which could give access to non-NHS bodies, including private firms...

[Healthwatch England chair Anna Bradley] said: "Once again the NHS has decided it knows best and is ploughing ahead with plans to share this data whether we like it or not.

"To make matters worse, the communications around this have been so poor that we are now in the situation where all of us are about to be automatically opted in to a scheme we know little or nothing about.

"While we recognise that sharing the data could be of significant benefit to researchers, the NHS has a moral duty to consult with all of us and trust us to make our own decisions."...

Tim Kelsey, NHS England's national director for patients and information, said patients need not have concerns as the information would not be "identifiable".

"This data is stripped of all the identifiers so, for example, the name and address features nowhere on this data; postcode, numbers, the data is stripped of all the identifiers and in their place are substituted meaningless pseudonyms in order that this data can be linked with other data sets.

"Can I be categorical? No one who uses this data will know who you are."

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I take it this is only happening in England at the moment, and not the rest of the UK?

Only NHS England at the moment, as far as I can tell.

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This seems a very strange idea, which goes completely contrary to the data protection mantras drummed into NHS staff.

As a researcher, data mining has been very difficult. You have to make an application to an ethics committee stating exactly what data you want, and exactly what analysis you want to do. Typically, they will not permit any personal or identifiable data to be used, and will also consider the possibility that "anonymised" data could be re-identified (e.g. rare diseases, details of date and place of treatment left in the data, etc.)

I've had some contact with the national cancer registries. They keep records of every case of cancer diagnosed in the UK. But if you want to get research data from them, it is extremely challenging, and if they judge that there is any possibility of re-identification of the data, then your whole project will be vetoed.

It should not be forgotten that medical data with name, address/postcode stripped off is still easily identifiable. Even medical data with Name, DOB, address, postcode, hospital number stripped off is still potentially identifiable.

I have grave concerns about this system, and the intention to sell the data commercially. It is more difficult than many people think to render data truly anonymous.

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I have grave concerns about this system, and the intention to sell the data commercially. It is more difficult than many people think to render data truly anonymous.

They've probably been told by prospective customers to ensure that it is identifiable ...

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