NHS care.data

[dino99]

Anyone received more information about this from their GP?

Is there an opt-out option like on the electoral register, where you can participate in public services, but not consent to your data being sold to private companies?

[muffins78]

What's this about? Are they able to sell private medical info about people now? Sorry I've not heard of this!!

[dino99]

NHS records are being centralised in a large, regularly-updated database:

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

The programme is called care.data and there are good reasons for doing it - paper files in different physical locations is rather old fashioned and inefficient, but 'approved companies' will also be able to purchase different subsets of the data from the government. This is something that I am interested in finding out more myself in order to be better informed.

[Loz]

I thought this had been put back six months due to the many concerns.

[Zaardvark]

Yes - it has been postponed and there will be a better opt-out process.

[bemusED]

true, the parliamentary process has been delayed but reality is, its too late

they've already sold our details, prior to the debate...

13 years of health records

for ?2k to the insurance industry

its like a script from a satirical comedy series

alas, this is real

http://www.wired.co.uk/news/archive/2014-02/25/insurance-companies-buy-medical-records

http://www.bbc.co.uk/news/health-26329748

http://www.telegraph.co.uk/health/healthnews/10656893/Hospital-records-of-all-NHS-patients-sold-to-insurers.html

[JDR]

There are actually two different systems. One will be useful for research etc another just sold to people willing to pay....

Will include quite a lot of info and anyone with knowledge of databases will be aware it won't be difficult for them to cross reference other data and actually work out who raw data belongs to.

Be aware they are also about to do the same with data from HMRC

[Penguin68]

If you do want to opt out, a suitable form (which allows you also to attach details for family dependents if minors) can be found here:-

https://medconfidential.org/how-to-opt-out/

There is also some more information on this site. I believe the problem is not the intent (which is to present aggregated data to allow research to be undertaken not just on hospital admissions - which is already up and running - but on GP issues as well) - but on the fact that despite assurances it would be possible, with only a litte data mining, to identify patients even where apparently anonymised information has been presented - and the government's (by which I mean any government's, I am not making a party political point here) inability to run things as expected and promised. There have been too many inadvertent and incompetant data breaches made by civil and other public servants - let alone those data breaches which were intentional and corrupt. The value of individual health information if you are an insurance company, wanting to write risk against known events, not probability, will become too attractive to avoid corrupt offers of access, particualrly if you fear your rivals have already got such access.

Whether NHS officials will take any account of expressed patient desire for opt-out is of course another moot point.

[hpsaucey]

Penguin68 Wrote:

-------------------------------------------------------

> If you do want to opt out, a suitable form (which

> allows you also to attach details for family

> dependents if minors) can be found here:-

>

> https://medconfidential.org/how-to-opt-out/

>

> There is also some more information on this site.

> I believe the problem is not the intent (which is

> to present aggregated data to allow research to be

> undertaken not just on hospital admissions - which

> is already up and running - but on GP issues as

> well) - but on the fact that despite assurances it

> would be possible, with only a litte data mining,

> to identify patients even where apparently

> anonymised information has been presented - and

> the government's (by which I mean any

> government's, I am not making a party political

> point here) inability to run things as expected

> and promised. There have been too many inadvertent

> and incompetant data breaches made by civil and

> other public servants - let alone those data

> breaches which were intentional and corrupt. The

> value of individual health information if you are

> an insurance company, wanting to write risk

> against known events, not probability, will become

> too attractive to avoid corrupt offers of access,

> particualrly if you fear your rivals have already

> got such access.

>

> Whether NHS officials will take any account of

> expressed patient desire for opt-out is of course

> another moot point.

Thanks for posting Penguin68!

Been looking for the form!

HP

[PeckhamRose]

Note this is not the same as the Spinal Core records. Also, note, that last week the Forest Hill Surgery had a Patients Forum meeting where I believe this was discussed as someone from the Care Data came to talk about it. I highly recommend you all try and join the Patients Forums of your surgeries because even if you can not get to meetings (and ours has meetings at different times of days to try and get everyone in) you can have access to the minutes to learn what is going on. FWIW I opted out of everything!

[PeckhamRose]

(And I HATE the dot in the middle of the two words. Life changed for this Grammar Pedant when EastEnders began!)

[Bes]

Thanks for posting this. I have confusion now about this, because I thought first that this was about the summary care records. I will have to opti out of it all until I am provided information on it officially. I have never had any contact about this that I am aware of by my GP, or any other forms of information from government.