NHS Sharing of our data - this affects us all

[steve9872]

I'm surprised that this system hasn't been running already for decades. It makes so much sense.

[stone_monkey]

Its a good idea if you have any sort of serious health condition. I opted into this sort of thing last February as I ended up with Type 1 Diabetes. It meant that any health care professional dealing with my condition have instant access to my medical notes regarding it. So, there is no mis-comunications, less form filling and it hopefully reduces errors while in treatment. So in that respect it is a good thing :-)

[Beate]

I think some of you are missing the point. This has nothing to do with co-ordinated care for you. Your data is collected so the state gets a better general picture about people's health, not so some doctor in London knows what your ailments in Manchester are.

This is what my Carers Centre newsletter and a follow-up email said:

Protecting the Privacy of Your Own Personal Health Information

As some of you may know from the news in the last few weeks, every GP is now required by NHS England to extract patient data from their records & pass this on to NHS Health Information Centre without your explicit consent to do so. This data will be pseudonymised i.e. personally identifiable data is blanked out however what NHS England failed to tell everyone is that the personally identifiable elements can be put back in again by purchasers of that data. Those companies can include your insurance companies, commercial health providers, drug companies, pension providers, mobility products suppliers etc. This is a money making exercise for the NHS yet it is your confidential & private information which is at stake. Your surgery can’t refuse to provide your information unless you complete the opt out form (attached).

You should have received a large mainly white NHS leaflet called ‘Better information means better care.’ It has been sent to every household in the UK. I got mine last week. It tells you why they want all your information from your GP but it doesn’t make it clear what they will do with it, whether they are planning to sell it or even how to opt out of the system as I have. The British Medical Association (which represents all GP’s) is sufficiently worried about how their patients confidential data will be used that they have been opposing the introduction of the GP Patient Data Extraction system but their views have been ignored by both government and the NHS. Using a database made up of everyone’s health data in the UK is a brilliant & extremely valuable asset for anyone interested in providing health care on a commercial basis-with this database they know exactly who in the UK has a particular condition-e.g. Alzheimer’s, diabetes, stroke etc and they can contact you directly to sell you products that may or may not work. This is privatisation of the NHS ‘by the back door’ and we will all become captive consumers. I’ve always relied on my GP to look after my confidential records but I will not allow him to add my information to be added to this new database. If GP’s are worried by it then we should be too.

[stone_monkey]

Ahh, my apologies I must have opted into something entirely different. It sounded like what was being discussed but is not. As it was a localised database linking GP's and consultants and nursing staff with regards to my Diabetes treatment. It was totally based around co-ordinated care and was really useful as info was there at the touch of a button. Not like when snail mail reports would take days to get from one place to another. I'd visit the hospital then couple of hours later visit my gp and he'd have all the data sets in front of him - no faffing about :-)

[June]

Absolutely right, people ought to seriously think about opting out.

The Carers Centre informed us of this a little while ago. We have already opted out by writing. They sent us a very good, easy to fill-in opt-out form. I can pass it on to anyone who'd like it.

Is there access to an online form,? I've not received anything in the mail and I'm really not happy for my data to be shared without my permission.

[Diane65]

Ahh, my apologies I must have opted into something entirely different. It sounded like what was being discussed but is not. As it was a localised database linking GP's and consultants and nursing staff with regards to my Diabetes treatment. It was totally based around co-ordinated care and was really useful as info was there at the touch of a button. Not like when snail mail reports would take days to get from one place to another. I'd visit the hospital then couple of hours later visit my gp and he'd have all the data sets in front of him - no faffing about :-)

And from me too and I accept that the dig is purely aimed at me missing the point (that's me well and truly told). I have opted in for the same data base as stone_monkey which doesn't happen as yet.

[Beate]

By pure coincidence, around the same time we got that info, we got a letter for OH from his GP surgery regarding setting up a co-ordinated care plan for him. I did ask the Carers Centre whether it was related and they said no, that one is absolutely fine, so we signed that and then the doctor asked us for an appointment and we gave a little bit more info and I think this one is a good thing for him.
You can see the difference in that you have to opt in for that, whereas the collecting of your private data will happen unless you opt out.

Diane65, I would never have a dig at you, I just used your example!

[tarantinoed]

I think some of you are missing the point. This has nothing to do with co-ordinated care for you. Your data is collected so the state gets a better general picture about people's health, not so some doctor in London knows what your ailments in Manchester are.

This is what my Carers Centre newsletter and a follow-up email said:

Protecting the Privacy of Your Own Personal Health Information

As some of you may know from the news in the last few weeks, every GP is now required by NHS England to extract patient data from their records & pass this on to NHS Health Information Centre without your explicit consent to do so. This data will be pseudonymised i.e. personally identifiable data is blanked out however what NHS England failed to tell everyone is that the personally identifiable elements can be put back in again by purchasers of that data. Those companies can include your insurance companies, commercial health providers, drug companies, pension providers, mobility products suppliers etc. This is a money making exercise for the NHS yet it is your confidential & private information which is at stake. Your surgery can’t refuse to provide your information unless you complete the opt out form (attached).

I feel like a real idiot - I didn't research it properly & thought it was something that it would make sense to do in order to benefit individual patients not something that basically satisfies the state urge to have as much info as possible on its population. I look at the FMUK forums more or less daily but don't usually post much & when I do I make a humdinger of a mistake!

[Beate]

This is the form I filled in, you could just copy and paste this into a Word document:

Dissent from secondary use of patient identifiable data

Dear Doctor,

I am writing to give notice that I refuse consent for my identifiable information to be transferred from your practice systems for any purpose other than my medical care.

As you are probably aware, on the direction of NHS England you can now be required to transfer patient-identifiable data from the electronic medical records that you hold to the Health and Social Care Information Centre (HSCIC), via the General Practice Extraction Service (GPES) or other means. This is to be done without seeking my explicit consent and for purposes other than my medical care.

There are substantial concerns about the privacy and confidentiality of any information transferred to HSCIC, not least because NHS England has been given legal exemptions to pass identifiable data gathered by HSCIC between itself and a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. I am also disturbed to note that HSCIC provides access to patient data, some in identifiable form, to a range of ‘customers’ including private companies.

I do not believe that these widely distributed systems with so many potential users and such a wide range of uses, some as yet undefined, can be regarded as secure. And no guarantees can be given as to the future re-identification of pseudonymised or de-identified data; indeed HSCIC admits this is a risk.

I cannot know what specific information my medical records might come to hold but I regard the entirety of my medical records, existing and future, as private and personal.

Please take whatever steps necessary to ensure my confidential personal information is not uploaded and record my dissent by whatever means possible.

This includes adding the ‘Dissent from secondary use of GP patient identifiable data’ code (Read v2: 9Nu0 or CVT3: XaZ89) to my record as well as the ‘Dissent from disclosure of personal confidential data by Health and Social Care Information Centre’ code (Read v2: 9Nu4 or CTV3: XaaVL).

I am aware of the implications of this request, understand that it will not affect the care I receive and will notify you should I change my mind.

I recognise the need for health care providers to be pa*d for services provided to me. I believe the limited information required for such purposes can be wholly anonymised by the provider, before it is released to the relevant commissioning authority. Please ensure that any of my information used for these purposes is treated in this way, and that any other providers are made aware of this mandate, e.g. by forwarding a copy of this letter along with my information when it is passed to them.

Further information for GPs can be found on the BMA website at:

http://bma.org.uk/practical-support-at- ... /care-data

Yours sincerely,


Signature _________________________________________ Date ________________



Information to help identify my records (please complete in BLOCK CAPITALS)


Title _______ Surname / Family name ____________________________________


Forename(s) _____________________________________________________________


Address _____________________________________________________________


_____________________________________________________________


Postcode ________________________


Date of birth ________________________


NHS number (if known) ___________________________________

[tarantinoed]

I can now see that I was confused with another initiative and opt out process - a good one: The Summary Care Record for emergency care:

http://www.connectingforhealth.nhs.uk/s ... 706web.pdf