Did you know that the NHS is about to share all your medical records without your consent?

[DontDrinkDontSmokeWhatDoIDo]

Sharing a post from elsewhere.

Did you know? Do you trust them?

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This has not been widely publicised.

At the moment, you have to specifically give your express permission for your GP to share your medical records with a third party.

From 1st July, all your past, present and future records will be routinely shared with a new service - NHS Digital.

Your GP's system will share all your medical information with NHS Digital - including your NHS Number and postcode.

NHS Digital will take all information, and use it for research, analysis, health policies, information on demographics, locations etc and to share with third parties (but not marketing or insurance, apparently).

They will use a system to anonymise your NHS identification, but reserve the right to de-anonymise it if they need to.

Your GP service will be adding a statement to their surgery to state that your data is shared with NHS Digital.

YOU HAVE UNTIL 23rd JUNE TO OPT OUT.

Article in FT explaining:
<a class="break-all" href="http://go.mumsnet.com/?xs=1&id=470X1554755&url=www.ft.com/content/9fee812f-6975-49ce-915c-aeb25d3dd748?fbclid=IwAR1bTPMveMOWmvz831XJ9M0QlAH_-ijZkcRe02lh5HTqGlUmQTBzlNPHp5U" target="blank">http://go.mumsnet.com/?xs=1&id=470X1554755&url=www.ft.com/content/9fee812f-6975-49ce-915c-aeb25d3dd748?fbclid=IwAR1bTPMveMOWmvz831XJ9M0QlAH-ijZkcRe02lh5HTqGlUmQTBzlNPHp5U

Website explaining in detail how to opt out for GP data sharing and NHS Digital data sharing (different data and processes).

https://medconfidential.org/how-to-opt-out/?fbclid=IwAR0VSAIiDnULoWSo5Z4vKqzvmLGXdiXr4chrC3ALdeYMVpTLxdeqVoyZG_o

I won't spam the threads but I really recommend The Patient Paradox by Dr Margaret McCarthy.

If I had read the first chapter three years ago, I would have been saved from an invasive and damaging procedure which had no basis, I was too trusting of the doctors.

Clearly a lot of us do want to opt out and I imagine I'm not the only one who has been the subject of this due to data indicating certain things - with no actual illness.

@katnyps

Also just because it's called NHS digital and has NHS branding means nothing really

I'm not sure what you mean by this? Are you suggesting NHS Digital isn't an NHS organisation? It very much is, and is the data custodian for NHS data. It's existed for ages (although with other names in the past) and I regularly have webinars with people who work for NHS Digital.

Bring benefits? I'm absolutely sure it could, to some.

To everyone?

Well, we can already look at the canonical example of the US, which is very good at develop new treatments but is 40th in the world in terms of life expectancy (UK is 25th) because, among other reasons, treatments aren't adequately available.

Their situation regarding health insurance companies is a major driver of that lack of availability.

en.wikipedia.org/wiki/List_of_countries_by_life_expectancy

You give facebook blanket permission to do what they like with anything they can when you sign up.

I don't, because I'm not on Facebook. Guess why...

Now it's worse. On Monday, the Health and Social Care Information Centre admitted giving the insurance industry the coded hospital records of millions of patients, pseudonymised, but re-identifiable by anyone with malicious intent, as I explained last week. These were crunched by actuaries into tables showing the likelihood of death depending on various features such as age or disease, to help inform insurance premiums.

You are aware you have to declare all and every medical condition when you apply for cover anyway. When I applied for my life insurance I had to give details of any visit to the GP within the last x amount of time and permission for the insurance company to gain more information if required. If I didnt I couldn't have got the cover

And yes insurance companies use this to calculate premiums.

The breech you're discussing, whilst undoubtedly a mess up, wouldn't have given the insurance company any more information than they'd have got anyway.

@katnyps

Also just because it's called NHS digital and has NHS branding means nothing really

NHS Digital is an arm's length body of the NHS. We used to be called the Health and Social Care Information Services, before then it was the NHS Information Centre, before that it was something else (I can't remember) We are commissioned by NHS England and are responsible for all NHS Data, systems and services. Without NHS Digital, there would be no electronic prescriptions, no organisation codes, no Caldicot Guardians, Safe Havens, Electronic Referral Systems, GP Patient Administration Systems, GP Payments, the list is endless! So the NHS 'branding' is not just branding!

I live in Berkshire. I see a specialist in Oxford. I get my blood tested in Berkshire but the specialist can't access the records to see the exact numbers. Needs sharing.

It’s anonymous, isn’t it?
No problem with that.

Thanks, Stroopwaffle5000. So NHS Digital is the rebranding of HSCIC, after HSCIC fucked up.

Well, we can already look at the canonical example of the US, which is very good at develop new treatments but is 40th in the world in terms of life expectancy (UK is 25th) because, among other reasons, treatments aren't adequately available.

But that's conflating the problematic way in which the USA fund treatment with this issue. This opt out isnt going to improve the way the USA fund treatment. It wont introduce universal access to healthcare if it was in the us either.

We do not live in the US and thankfully we dont fund healthcare the same way.

Repeat prescriptions and hospitals being able to access your data for your care used to be handled by your Summary Care Record, on the NHS Spine.

In fact looks like that's still the case: digital.nhs.uk/services/summary-care-records-scr

Distributing your medical information to third parties for reasons other than your immediate medical care, should be a separate issue.

However, those wishing to use our data for commercial or political uses might like the one to be a pre-condition for the other.

Agreed that the US funding structure is fucked up.

What it provides the canonical example of, is that the existence of medical knowledge need not go hand in hand with good treatment.

Handing around our data around might well enable the development of new treatments. It does not have any bearing on whether the poor among us will receive those treatments.

Similarly, the US shows how our medical data could be used to exclude us even from existing treatments. Before you crow that that doesn't happen in the UK, be aware that recent UK governments have shown plenty of appetite for moving away from universal care (Nu Labour as well as Tory), and hold conferences with the US medical insurance companies to discuss how to do this.

It’s anonymous, isn’t it?

No. It's pseudonymous – like your MN nickname. And as with your MN nickname, you can be outed in a variety of ways.

You might decide this is fine by you. You should be given the opportunity to make an informed decision.

Couldn't give a shit? Have to pay privately sometimes as not available on the NHS and every cunt tags themselves in hospital on Facebook anyway

You give facebook blanket permission to do what they like with anything they can when you sign up. you give them permission to give the data to god knows who

This is not in any way shape or form the same set of permission you are opting out of here. The NHS website isnt hiding its "terms and conditions", the links been posted by someone above. It's pretty clear.

It's not "pretty clear".

I'm one of the posters who linked to the T&Cs. I'll do it again; they're here:

digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice#how-we-use-patient-data

It's full of the sort of weasel words used by every data collector ever.

We'll share your data with [few examples], and anyone else we decide to.

Your data will be processed "within a secure data access environment within NHS Digital infrastructure", except when it isn't.

Your data won't be personally identifiable, except where it is.

@PausingFlatly

It’s anonymous, isn’t it?

No. It's pseudonymous – like your MN nickname. And as with your MN nickname, you can be outed in a variety of ways.

You might decide this is fine by you. You should be given the opportunity to make an informed decision.

How is MN pseudonymous please?

@BecauseMyRingBurnsSheila

www.mumsnet.com/Talk/am_i_being_unreasonable/4258306-To-think-this-is-out-of-order-from-the-NHS

There's already an active thread in AIBU so YABU to repeat half truths.

I explain my reasons on the other thread but your data isn't going to be sold, it's going to be used for research and planning purposes so YOUR future health and care needs can be planned for. Aging population? That's dementia services your area needs. Certain ethnicities? That's diabetes services your area needs. High birth rate? That's school places your area needs. Without this data people who plan YOUR services FOR YOU will just be blind guessing. Not even educated guessing! Opt out if you want but when services are overwhelmed in your area it'll be because planners didn't have the data to make the case for extra funding.

I received a letter with my NHS number on it from Imperial College asking me to take part in a Covid survey - they wanted me to have a test and send the kit back to them. When I ignored them I got a couple of text messages to my personal mobile phone trying to get me to participate.

I have opted out of data sharing but my name. address and a private mobile number had been released by the NHS to this third party without my knowledge and consent. Nothing the least bit anonymous about it

This is the thin edge of the wedge.

Elphame that's dreadful.

Did you find out how they got your info?

So it really comes down to how much you trust government mega IT projects which exist to distribute your data to third parties.

Will they only distribute your data in ways you would approve of?

Will they never have data breaches?

Will your data never be distributed to a third party who then distributes it further or has a data breach?

The last, by the way, is what happened to Facebook data. This story rumbled for a while in several iterations, as the various participants juggled the hot potato of blame. Eg Facebook enabled Aleksandr Kogan's harvesting of user data, but says it did not give permission for him to pass that data on to Cambridge Analytica.

It is certain that many of the users whose data was harvested did not give permission for Kogan to take it for any purpose at all, because they didn't even know Kogan's app had been installed by the person they were messaging.

www.theguardian.com/uk-news/2018/apr/13/revealed-aleksandr-kogan-collected-facebook-users-direct-messages

MN is pseudonymous in that you have just addressed me as "PausingFlatly".

That's a pseudonym.

You could, if you wished, do advanced search on the name PausingFlatly and you'd find out all sorts of things about me from my previous posts. You could build up a picture of PausingFlatly. You wouldn't know my real name, but you'd know a version of me.

If for some reason I made one post that allowed you to identify PF as real me (and this does happen on MN), you could go back through all the posts of my pseudonym PF and tie them all to real me.

Whereas if posts were anonymous, and not attached to a user name (as eg The Register does with its "Anonymous Coward" designation), you wouldn't be able to tie PFs posts together and identifying real me in one post would not give you any further information.

What NHS op there are 4 countries in the UK or are you too enraged to know that.

Thank you Pausing

The opt-out information that the OP linked to at Med Confidential is for England, giggly.

Someone linked a Scottish one yesterday. Hang on.

Here: spire.scot/resources/_docs/SPI27400-Spire-opt-out-form_web.pdf

(Again, it's nice and fluffy and positive-sounding.)

Wales and NI I don't know about.

@Ostara212

Elphame that's dreadful.

Did you find out how they got your info?

Short answer - no. I wish I'd kept the letter now rather than throwing it away.

By the way, I'm on the bench where Ben Goldacre was in 2014.

I can absolutely see how powerful data is.

I'd really love for that power to be used for good developments in healthcare.

I just don't currently trust that it will be. The betrayal of our trust by the HSCIC, in very recent memory, means mass distribution of medical data kicked off on entirely the wrong foot. They haven't come back from that, in my eyes.

But everyone will have to decide for themselves.