To think this is out of order from the NHS!

[VaccineSticker]

www.ft.com/content/9fee812f-6975-49ce-915c-aeb25d3dd748#comments-anchor

“England’s NHS plans to share patient records with third parties
55m patients have until June 23 to opt out of having their health data scraped into a new database”
🙄😤
So they want to sell our data without our consent because we are automatically opted in.
Who are they selling it to and what are they doing with it and why is anyone’s guess.
I’m opting out as soon as I have a minute to sort out the opt out form - I’m angry that I have to waste my time to opt out of something I never opted in and my data is going to be sold to random 3rd party. Regardless whether the data is going to be anonymised, the whole thing is plain wrong.

NHS Privatisation is well and truly here.

'If you choose to stop your confidential patient information being used for research and planning, your data might still be used in some situations.

When there is an overriding public interest
In an emergency or in a situation when the safety of others is most important. For example, to help manage contagious diseases like coronavirus and stop them spreading.'

I'm the opposite, I was horrified to discover that our medical histories aren't already used for research and are harvested for data.

Basically if your in the vulnerable category (shielding) they can access your data anyway "for the greater good"

Some of this data is anonymised meaning the individual 'patient' can never ever be identified. It's impossible.

Some of the data is pseudonymised meaning in simple terms that it's given a complex set of codes that if in ultra extreme circumstances it is essential that a patient is identified (such as being patient zero with a new deadly virus) the codes can be reversed.

There are only FOUR people in the UK with the permission and ability to do this. It is NOT something that your average number crunching research scientist could stumble upon by accident.

I don't think the NHS is being given the choice. I think this is a central government directive.

It's very worrying wherever it has originated. And as others have said, surely it breached Data Protection and confidentiality.

It doesn't breach any GDPR or confidentiality because there is no identifiable personal data belongs to.

Maggie is gay and likes jelly beans = breach of GDPR
10% of women who identified as gay like jelly beans = not identifiable. No breach of GDPR

It is a myth that it is possible to anonymise data

How many male diabetics aged 60 live in your postcode ?

@midgedude it isn't a myth, it entirely depends what data is kept /pulled together, if postcodes, DOBs, sex and medical condition were linked in the dataset/share then yes that couldn't be classed as anonymous data, it takes more than stripping a name to make data anonymous, something GDPR very clearly considers and statistical experts aware of. You're looking at the data two-dimensionally.

[quote user7836]@midgedude it isn't a myth, it entirely depends what data is kept /pulled together, if postcodes, DOBs, sex and medical condition were linked in the dataset/share then yes that couldn't be classed as anonymous data, it takes more than stripping a name to make data anonymous, something GDPR very clearly considers and statistical experts aware of. You're looking at the data two-dimensionally.[/quote]
The data won't include full postcode, only the first part of it. Which makes it much more difficult to identify individuals.

I don’t object to this - medical research or NHS improvement projects can have my data because I believe that it will be for good causes in the long run.

Also, there is no full date of birth. Normally we only get year of birth.

@midgedude

It is a myth that it is possible to anonymise data

How many male diabetics aged 60 live in your postcode ?

Before any data is passed to the research organisation it is checked to ensure that there is absolutely no 'identifiability' so for example your postcode example would never be allowed to be shared.

The data sets will be much much larger.

Even if by some human error the data got through and you as the researcher were able to identify Bob round the corner because he's the only 60 year old diabetic in your city, you would not also be able to access any of his personal information.

I'm now thoroughly confused about which form to use to opt out of what

Would someone be kind and go through the authoritative version again?

Agree with @FaceyRomford. Why would anyone object to this? Haven’t you all got more important things to worry about? Perhaps just perhaps, this anonymised data (and it is anonymised as @MonicaGB describes and I know as I work in primary care) might be used for the greater good.

Just wanted to say GP practices are not making any money from data extractions. They are legally enforced by NHS Digital and only if you dissent from sharing will your data not get shared.
Personally I'm not bothered about pseudo-anonymised data being shared to better research what local services are needed. I am pretty irritated that GP practices will now get a shit load of admin because of this and patients will moan even more because we're trying to sort this. Try inputting dissent data and answering the phone.

Allowing your data to be included in aggregates for research purposes is a way to contribute to society at zero cost to yourself. I see no downside for individuals.

Yes GP’s will make no money from this and no benefit to them directly

The opt outs are your legal right to do so but I think it’s false information that they are selling on your personal data which can easily be identified, like someone has said it will be a bulk data set. I have used Medi analytics to look at data before and it was set per locality which could be for instance 5,000 - 100,000 people, not by postcode as in who lives on X street and has a brown cat

They will look at how many diabetics live in the locality, and for instance how many times they have visited A&E. How many children visit A&E in the locality, and for what reason. Having those tools to plan services will help? Primary care networks and CCG’a already use this information to plan their own services but on a wider scale it wouldn’t have any value to be untangled - that’s not what it is being used for.

Isn't the GDPR an EU law? Is it still applicable in the UK now?

@Peacelillyhippy

Isn't the GDPR an EU law? Is it still applicable in the UK now?

Yes, we put it fully into UK law in standalone legislation.

If we ditched it, UK businesses would have even more problems selling into Europe than they have now, and the EU would refuse to share data with us on all sorts of vital things.

Thanks for that explanation

It's anonymous and you can opt out struggling to see the issue. You'd be better spending the time to do this thread opting out .

This has been going on for years I joined the big opt out in 2006, when I changed surgeries in 2010 I reprinted the letter and gave it to them,

Yes but the third parties aren’t PPI scams for God’s sake. They’re talking about companies involved in medication development, medical research, mobility aids, NHS service improvements.

And the data is anonymous - no precise DOB, no name, no address details or full postcodes.

This isn’t some sinister plot.

In an area of 5000 people there are on average 60 people the same age as you , only 30 of whom are the same sex as you. Only 15 of whom have given birth. Only 5 of whom are in the same income group as you ....

I am happy that research organisations get access to data

I am not happy for Commercial organisations to have the same data

Your medical records do not contain details of your income