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.

@colouringcrayons
Maybe we should fund them properly then

I agree, but then I’m not the one voting Conservative.

@MintyMabel

They’ve stated commercial companies

So they can target GP practices and the NHS. Not so they can target individual patients.

Who (I presume) would come under the umbrella of accessing anonymised data for research/planning. The addition of ‘third parties’ is ambiguous and open to interpretation at a later date without the need to justify, seek further consent or publicise anything.

I used the online opt out (know my NHS number) and it was easy enough- though a bit biased to try and make you consent, and not opt out.

@Menora

It is anonymised data For research and planning purposes

They aren’t selling it to PPI firms

Data will not be totally anonymised. The NHS will hold "codes" which can unlock an individual's records should there be a valid legal reason. All "events" documented by a GP about a patient will be linked to the patients NHS number, date of birth and postcode. This information will be available to the "buyer" of people's medical records.

[quote MaskingForIt]@colouringcrayons
Maybe we should fund them properly then

I agree, but then I’m not the one voting Conservative.[/quote]
Two wrongs don't make a right though, this is not ok without consent

Their mythbuster section in on of the links explains who it is not shared with.
I have no issues with anonymosed data being shared for statistics and research. It's not selling it to Aviva or Boots.

There's a very good article about it here medconfidential.org/how-to-opt-out/ It's not nearly as anonymous as some of you seem to think.

@SchrodingersImmigrant

Their mythbuster section in on of the links explains who it is not shared with. I have no issues with anonymosed data being shared for statistics and research. It's not selling it to Aviva or Boots.

Well that’s okay then.

Let’s have a well publicised conversation about it then and not rely on ‘blogs’ and flyers in locations people aren’t frequenting.

I work for the NHS using this data and it requires so many hurdles to jump through to get access and there has to be legitimate uses for approval to be made. Anything sensitive is already stripped from the data and everything has to be low number suppressed to ensure no one can be identified. I assure you I treat everyone's data with the upmost respect. It is used for planning purposes only and we are trying to improve primary care through the use of it.

Monica, YOU may treat people's data with the utmost respect, but this is the current government we're talking about. I wouldn't trust them with a packet of cornflakes, personally.

Let’s have a well publicised conversation about it then and not rely on ‘blogs’ and flyers in locations people aren’t frequenting.

They claim it was publices few years back. Interesting no one remebrs tho

@FangsForTheMemory

There's a very good article about it here medconfidential.org/how-to-opt-out/ It's not nearly as anonymous as some of you seem to think.

I'd struggle to even identify myself from the data, due to the way it's provided. It's not provided in a neat way. It's literally just a load of codes, which can be pulled out using coding packages to look at a population. We don't have the time or inclination to be looking at individuals.

It is used for planning purposes only and we are trying to improve primary care through the use of it.

Can you be more specific?

@FangsForTheMemory

Monica, YOU may treat people's data with the utmost respect, but this is the current government we're talking about. I wouldn't trust them with a packet of cornflakes, personally.

Lol, fair enough. I don't really trust the government either. They would still have to jump through the hoops to get access! NHS England really won't just open it up to anyone. I'd also like to see them be able to understand anything that it's saying as it is literally the most horrendous dataset in the NHS.

Thanks for the heads up. I opted out just now. Took 30 seconds

@AnneLovesGilbert

It is used for planning purposes only and we are trying to improve primary care through the use of it.

Can you be more specific?

Identifying population health needs which GPs to work on. Identifying groups of people who aren't getting the interventions they need to prevent them from developing illnesses. Understanding what is being done in GP practices and with hospitals to make sure everyone can be treated in a more timely fashion. Looking at recovery from covid stuff to try to clear backlogs.

Lots of stuff can be done using GP data that we've not been able to do before as we only see the patient data when things have gone wrong and they end up in hospital.

Wow my job must seem very dull to other people

I haven’t had chance to look at the form yet but ‘anonymised’ is a very wide net. On your street how identifiable do you think you are if your anonymised data was sorted by postcode, birth date, sex and a random piece of medical history. For example the year I gave birth along with my postcode, date of birth and sex would make me if not immediately identifiable one of a couple.

Not in GDPR it isn't, GDPR very clearly states that data that identifies someone, directly or indirectly, is personal data. Thus what you're describing isn't anonymous data, as you say, you can technically be identified. Anonymous is also very different to psyeudonomous which has had the identifier visibly stripped for sharing/publication but can be reverted, this is never classed as anonymous data.

If it's anonymous, theoretically, there should be no way of identifying an individual, or it isn't anonymous.

Just linking to the mythbuster here as it looks like some myths need busting here:

digital.nhs.uk/services/national-data-opt-out/mythbusting-social-media-posts

I'm currently working on a very complex NHS project and am still not allowed patient level data for my planning and it's a nightmare.

Data will not be totally anonymised. The NHS will hold "codes" which can unlock an individual's records should there be a valid legal reason. All "events" documented by a GP about a patient will be linked to the patients NHS number, date of birth and postcode. This information will be available to the "buyer" of people's medical records.

If this is true (haven't looked into) by GDPR's standards it's pseudonomous (sorry if spelling is wrong checker isn't recognising it and can't be arsed to Google!) it's a risk mitigation but absolutely not anonymous, as you say it can be reverted, though reduces risks of breaches. Anonymous data isn't personal data. It's outside of GDPR scope. If it's paeudonomised it's personal data within scope.

Does the privacy notice state it is anonymous?

Can someone please explain why I should object to this?

@Menora

It is anonymised data For research and planning purposes

They aren’t selling it to PPI firms

This 👍

I'm happy to be in the scheme, I have done several unpaid clinical studies,don't mind my data being used for research or marketing.

They are saying the data will not be sold to third parties and that you can opt out at any time: digital.nhs.uk/services/national-data-opt-out/mythbusting-social-media-posts

This does not mean that your entire medical record can be passed to commercial companies lock stock and barrel. e,g X is a 39 year old left-handed woman with a history of mild depression and a dodgy rash in her teens.

Instead it's passed over as vast data sets, so e.g. 12% of people who've had dodgy rashes are left handed. There is no way that anybody would ever be able to link the data with any one person.

Opting out merely means that your numbers don't get counted in the overall data. It's pretty meaningless.

It's very very hard to truly anonymise data

It's usually easy to put it together with other data and untangle it

Especially if the people looking at it collect tons of other data already