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 am by no means an expert on GP data collection and sharing, but this page would suggest your data is already being collected by NHS Digital and being used for care planning and research, and this is just a new way of collecting it:

digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research

The data isn't being anonymised, it's being pseudonymised and can be used to identify you.

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

NHS Digital will be able to use the same software to convert the unique codes back to data that could directly identify you in certain circumstances, and where there is a valid legal reason.

@Hazelnutlatteplease

That's hardly the same as your medical history being shared!

Really?

Never used your tesco clubcard to buy pain killers, nicotine patch, pregnancy test, condoms, slimfast, tampons, head lice treatment, gluten free products, baby food, specialist baby food, infacol, st John's worth, nytol... etc etc

Ever used a comparison site to search for travel insurance? Car insurance? (You have given you name etc too)

Never Joined a Facebook group about a medical condition, posted about your location, posted your date of birth, searched Facebook about a medical problem?

In all these situations you will have provided significantly more information, with full details about your name address and location. You also have no control over where the data is going.

Yes I have bought some of those items in Tesco. Haven't done the other two, I am not on FB. Even if I had it's still nothing like sharing my medical records!

But I'm yet to see any real actually applicable explanation of why you would want to.

Hazelnutlatteplease, this post of yours today is strange, because yesterday you posted on a (short) thread on which I linked to real life things that had already happened, which might make people not want to share their data.

I mean, I'll post some of this material again. But it's not great that you're pretending not to have seen it and are (oh the irony) accusing other people of being disingenuous.

So, this is what was going on in 2014:

Millions of NHS records sold to insurance firms
Millions of patient records were sold to insurance firms who used it to set their critical illness premiums in a series of 'unacceptable lapses', an independent review finds

www.telegraph.co.uk/news/health/news/10906390/Millions-of-NHS-records-sold-to-insurance-firms.html

@RichardMarxisinnocent ah gotcha thanks for that explanation!

No doubt someone will be along then to explain why this proposed sharing of primary data is so awful then and why they are specifically wound up about it and want to opt out of now rather than before. I’m sure there’s a very good explanation beyond “social media got me wound up about it”.

I am part of a medical research study and have been for 25 years.
I was informed by them (Kings College London) that my research data would be shared.

I can only see it is a good thing.

I'm sure they'll be blown away by the fact that I got my ear syringed 4 years ago and haven't been there since

[quote PausingFlatly]So, this is what was going on in 2014:

Millions of NHS records sold to insurance firms
Millions of patient records were sold to insurance firms who used it to set their critical illness premiums in a series of 'unacceptable lapses', an independent review finds

www.telegraph.co.uk/news/health/news/10906390/Millions-of-NHS-records-sold-to-insurance-firms.html[/quote]
I can't read that but that's exactly the sort of thing I am worried about.

Look at the wording on the so-called "myth busting" page. Written by Cummings was it?

@RichardMarxisinnocent and @Dyrne

Oh yes, and what a great success that has been.

More from the 2014 debacle, when it started to come out that patient data was being passed around.

NHS England patient data 'uploaded to Google servers', Tory MP says
www.theguardian.com/society/2014/mar/03/nhs-england-patient-data-google-servers

and

NHS patient data to be made available for sale to drug and insurance firms
www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy

Drug and insurance companies will from later this year be able to buy information on patients – including mental health conditions and diseases such as cancer, as well as smoking and drinking habits – once a single English database of medical data has been created.
[...]
But privacy experts warn there will be no way for the public to work out who has their medical records or to what use their data will be put. The extracted information will contain NHS numbers, date of birth, postcode, ethnicity and gender.
[...]
Booth said the five listed reasons data can be released for are exceptionally broad: health intelligence, health improvement, audit, health service research and service planning. He said: "Officials would have you believe they're doing this all for research or improving care but the number of non-medical, non-research uses is ballooning before even the first upload has taken place. And though you won't read it in their junk mail leaflet, the people in charge now admit the range of potential customers for this giant centralised database of all our medical records is effectively limitless."

@DontDrinkDontSmokeWhatDoIDo I’m sorry to have to tell you this, but “Government/Public service manages to epically fuck up the roll out of a digital programme” isn’t the massive revelatory bombshell you’re hoping it is…

Look, I’m not disputing there’s potential for fuck ups here. What I am wondering is why this specific change is the one that deserves a “if you don’t forward this on to 10 people Matt Hancock will eat your babies” style chain letter?

The debacle caused it to be kicked down the road, and I've lost sight of it since.

Taking a quick look at current proposals, this looks like the whole thing reheated.

Indeed reheated in an era when there is now substantially more tracking data to cross-reference it with, the Big Data market having become much larger and more sophisticated.

This was a MN thread at the time, explaining how pseudonymisation is really not very good protection.

www.mumsnet.com/Talk/general_health/a1870445-Important-information-for-NHS-patients-in-England?msgid=50462426#50462426

This some of what I posted on the other thread.

For myself, it isn't the individual repersonalisation I'm concerned about.

It's the mass munging of the data of the sort that Facebook did, where it took members' likes of music and posts, and and used it to segment the population into psychometrically aligned groups it called "universes". This data was then used by Cambridge Analytica to target universes, for purposes of political manipulation.

Retailers, of course, use the same Facebook universes to try to sell you more stuff.

Facebook also collects a lot more data on you, eg when you visit third party sites like MN that have the Facebook icon, and also using "device identification data" to recognise your mobile phone or laptop when you're on their site. It also, of course, asks for your phone number, and can potentially use that to identify you across a lot sites.

Facebook isn't the only company doing this, of course, just the most well known (and the one that got caught). Lots of sites now collect and trade in our data, and there's the computing power to make use of it in a way that didn't exist when the internet was young.

Oh, and if you don't have a Facebook account, there's a strong suspicion that Facebook is creating what's called a "shadow ID" for people as they move around the internet.

This is what's going on in the Big Data world.

I don't know all the things our medical data will be used for, but I'm pretty sure that some of it I won't be happy with.

[quote Dyrne]@DontDrinkDontSmokeWhatDoIDo I’m sorry to have to tell you this, but “Government/Public service manages to epically fuck up the roll out of a digital programme” isn’t the massive revelatory bombshell you’re hoping it is…

Look, I’m not disputing there’s potential for fuck ups here. What I am wondering is why this specific change is the one that deserves a “if you don’t forward this on to 10 people Matt Hancock will eat your babies” style chain letter?[/quote]
Does that mean there's lots more things being rolled out please?

And this is not a chain letter!

@PausingFlatly

You do realise that was done without anyone's permission. This opt out wouldn't have done anything to prevent that.

If you dont trust the NHS at all for any reason that's a far bigger problem. Your best safeguard there isnt this opt out, its opting out of the NHS full stop.

How can one "opt out at any time" once the data has been shared I'd it's anonymised... surely in order to delete YOUR data from the data set it has to be identifiable?

More from 2014.

Ben Goldacre, who had previously been a fan of handing out data, on discovering what had actually been going on.

^www.theguardian.com/commentisfree/2014/feb/28/care-data-is-in-chaos^
www.theguardian.com/commentisfree/2014/feb/28/care-data-is-in-chaos

I am embarrassed. Last week I wrote in support of the government's plans to collect and share the medical records of all patients in the NHS, albeit with massive caveats. The research opportunities are huge, but we already knew that the implementation was chaotic, with poor public information, partly because the checks and balances on who gets access to data – and how – have not yet been devised or implemented. When you're proposing to share our most private medical records, vague promises and an imaginary regulatory framework are not reassuring.

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.

We can reasonably disagree on whether you find this use of your medical records acceptable, but the process must be competent and transparent. The HSCIC has now told the BBC that this release of your medical records broke the rules, and that there may have been other similarly erroneous releases: but it won't say more until "later this year".

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

I need to read more about this but based on very limited information my reaction is "It's about time". When I moved to UK I found it very odd that all patient information wasn't in a digital system and my gp would sent me the medical case via mail after my appointment instead of me reading it on an online system.

The third party thing can be worrying but that really depends what it means. Medical research? Absolutely, I've always concerned to that. A spam website that can then advertise viagra? No thanks.

What springs out from is that sharing patients' data broke the rules, but HSCIC did it anyway.

That certainly fits with the ethos of the Big Data boys: do it first, ask permission afterwards.

To be fair I do think it's inevitable and ultimately could bring benefits to everyone but God I do not trust this government to deliver it with the average persons best interests at heart ... or at all competently

I have worked for NHS Digital for the past 14 years, it's not a new service, it's responsible for Electronic Prescriptions, Organisation Data Services, Care Identity Service, Breast Cancer Screening, to name but a few.

I don't know all the things our medical data will be used for, but I'm pretty sure that some of it I won't be happy with.

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.

The potential benefit to future generations here is huge. It's a bit like nuclear fusion can be used to create the atom bomb but it can also be used to create energy. Thats not to say both dont have the potential to blow up in your face, but one produced relatively clean electricity to what was available previously and one has no redeeming values whatsoever. The theory may be the same the application and societal value is vastly different.

Theres the potential for huge medical gains here. For me There's got to be a damn site better reason to throw that away than the NHS fucked up in the past and Facebook made me do it.