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

www.ft.com/content/9fee812f-6975-49ce-915c-aeb25d3dd748?fbclid=IwAR1bTPMveMOWmvz831XJ9M0QlAH_-ijZkcRe02lh5HTqGlUmQTBzlNPHp5U

Because alarming username btw! 😂

"The half truth is there's a proposed change to how the data is shared. The rest is hyperbolic, scaremongering nonsense."

If that's the case, the NHS needs to set everyone straight, and fast.

Is this for England only?

How is NHS digital a new service? My DH has worked there for years. It isn't an outsourced organisation. He is an NHS employee working for the NHS, just the digital side of it. I can't understand the shock of the NHS sharing information with the NHS, presumably the make the NHS better?!

@Dyrne

Fair enough, good point!

The Government is railroading a massive privacy change in through the back door, capitalising on people's heightened fears over & after Covid.

(In my opinion).

@Ostara212

Because alarming username btw! 😂

"The half truth is there's a proposed change to how the data is shared. The rest is hyperbolic, scaremongering nonsense."

If that's the case, the NHS needs to set everyone straight, and fast.

Here we go, from the NHS

www.england.nhs.uk/contact-us/privacy-notice/how-the-nhs-and-care-services-use-your-information-the-national-opt-out/

Can I actually get any verifiable reason why this is bad?

Neither article actually explains why people might want to opt out and what specific harms we should be concerned about.

The lady is very interesting but not specific to this situation where the data is limited and anonymised.

Still not getting any actual facts on why this is a problem

Genuine question for someone knowledgable then:

If the NHS wasn’t already doing this, then how do we know stuff like “Cancer affects 1 in 2 people”; or that in 2019 someone was diagnosed with Monkeypox?

@Unhomme

I hope you don't have a clubcard, nectar card, credit card, any other loyalty card or social media then. You wouldn't believe your data that is already floating around...

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

The Government is railroading a massive privacy change in through the back door, capitalising on people's heightened fears over & after Covid.

If you are interested in public affairs I've already heard about this for weeks. In various circumstances I've actively opted in to such schemes where the opportunity has been there to push science forward.

This isnt Facebook, Tesco club card etc.....

This could actually be a fantastic thing. The lack of communication between NHS services is horrific.

For example if your in Scotland and have ever used NHS24 on 111, did you know that they have no access to any of your health information such as blood tests, investigations or referrals? If your GP is half decent they can add a note to your record but that’s extremely few and far between.

Because thank you
I've seen those pages before
They do not reassure me.

And have I missed where it says "we will have your NHS record available at any hospital in England to assist with your treatment?"

If all this info is wrong, why not get the Health Secretary to explain it in a presser? Have the transcript available, put on NHS website.

I literally only know this because of MN.

This is from the NHS page itself.

It's carefully worded, of course.

'Data is anonymised before it leaves your GP's surgery' = your records are put through an automated process so your name, NHS number etc are reformatted into a structured code.

"
We would only ever reverse this process if you've already give your consent or we have any other legal reason to do so."

"We may contact you to ask if you would volunteer."

A central body, who is not your GP, has the ability to directly identify you based on your GP records. Tonsillitis, thrush, abuse, depression, abortion, ear ache, drug use, alcohol dependency, in growing toe nails, skin cancer.

Not for me, thank you.

I'll happily provide data on a needed basis.
Not blanket access to be stored and vulnerable to breach, pivoted and shaped in whatever way required.

Who has access to it?

I work in the nhs and this is going to make care for patients so much easier and more efficient. There are countless times I've had to refer people in for something I'm sure is long standing but I have none of their history and patients don't remember what happened. It will save practitioners time and patients time. Less wasted appointments and less repeated tests.

@TidyOmlette

That would be very helpful, I agree, but this isn't what that is.

@Numnumcookie

That would be massively helpful but this isn't what this is.

Did you get told that it was?

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.

@Hazelnutlatteplease

I think you're deliberately being disingenuous here.

Many people don't have reward cards etc for the reasons you state, but having a GP
record is hardly the same thing, is it 🤨🤨🤨

@MarshaBradyo

Who has access to it?

I can't seem to get a clear answer. No such info provided by the NHS.

The NHS page does say exceptional circs will apply, e.g. pandemic

The Health Secretary also tweeted that GDPR has exemptions "because pandemic".

Some of the examples posters are giving...jeez, no I have never shared data there!

I'm not complaining about peoples having the right to opt out.

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

As I understand this you are solely giving permission for data to be shared, in an anonymised form, for the sole purpose of future provision planning and medical research. And yes that is done by commercial companies.

The permissions you are opting out of are not the same as Facebook etc...

Its disingenuous to say people should opt out because of very real, genuine concerns about facebook etc.

Perpetuating myths to prevent something that could do a lot of people a lot of good isnt to my mind socially responsible.

@Dyrne

Genuine question for someone knowledgable then:

If the NHS wasn’t already doing this, then how do we know stuff like “Cancer affects 1 in 2 people”; or that in 2019 someone was diagnosed with Monkeypox?

This is already happening with secondary care (as in care in hospitals rather than GP practices). Here is some information about it on the NHS Digital website digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections and here digital.nhs.uk/services/secondary-uses-service-sus.

@BergamotMouse

How is NHS digital a new service? My DH has worked there for years. It isn't an outsourced organisation. He is an NHS employee working for the NHS, just the digital side of it. I can't understand the shock of the NHS sharing information with the NHS, presumably the make the NHS better?!

I was somewhat confused by the "new service" reference. I work in informatics at a hospital a Trust and we've been submitting various data sets of patient information to NHS Digital and its predecessors for years.

@Hazelnutlatteplease

I'm not complaining about peoples having the right to opt out.

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

As I understand this you are solely giving permission for data to be shared, in an anonymised form, for the sole purpose of future provision planning and medical research. And yes that is done by commercial companies.

The permissions you are opting out of are not the same as Facebook etc...

Its disingenuous to say people should opt out because of very real, genuine concerns about facebook etc.

Perpetuating myths to prevent something that could do a lot of people a lot of good isnt to my mind socially responsible.

👏