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.

@Cornettoninja I’m sorry but what you’re saying isn’t true for government held public data sets. Yes it is true for the private sector. But that’s completely different. Talk talk has nothing to do with government data. Data leaks from government sources are incredibly rare. There is no way I could link back the data I receive to individuals. No way and it just wouldn’t happen. Nhs data sets have tighter security than fort knocks!

There is a huge difference in that the NHS will remain the data controller. They are not giving data to third parties to do what they want with... they will be contracted to process the data in specific agreed ways, with no risk of identify individuals.

Please read the replies from those of us who actually use this data in our jobs. We do actually know what we’re talking about!

I don't think many of you truly understand what you're opting out of here, and how it could in future be detrimental to your care.

Shehasadiamondinthesky makes a very good point in her post

@SmiledWithTheRisingSun you can rest easy that your personal medical record will never be shared. Some of it will be coded and the anonymous data shared.

No one is interested in the ins and outs of your GP consultations- just the overall number of Eg The number of women with pre-diabetes NDH in mumsnet ward (or SOA to statisticians) split down into ethnic groups. A company may then use this info to target leafleting for a weight loss programme at those areas.

Ive just filled in this form and was going to post it, then thought why am I spending out for a stamp for something I havent asked for !

@Shitfuckcommaetc yes the education of people in the country when it comes to data sharing astounds me. They’re on mumsnet - sharing lots of personal data in their posts which will be mined/ sold by mumsnet, used by bots, other apps on their phones etc.

While the NHS data will just be used to improve care. And companies might use the data to stratify their marketing more effectively (rather than blanket message everyone- this is nothing new!).

There is nothing nefarious about this and it will only cause people more harm by opting out.

@MaskingForIt

Seems perfectly reasonable, they are desperately underfunded and selling datasets will generate income. If you think this is what “privatisation” looks like you’re going to be in for a nasty shock when the real thing hits.

Imagine if we'd been contacted with the message

"We are selling anonymised data to raise funds for the NHS. Would you like to opt in?"

Trust would not have been eroded so badly.

@ChelseaChop I don’t doubt anything anyone has posted here at all but let’s be honest, if I have unfounded doubts that’s not on me and really I shouldn’t have to look to unaccountable people on the internet for reassurance, particularly with a deadline looming.

Data is a contentious issue, that’s not news and well known; if there is going to be an absolute deadline set then the responsibility is on those organising it to make sure that everyone affected has adequate opportunity to obtain information about it. That has not happened and is a failing imho. That failing compounds my personal reservations, which I absolutely accept may be completely unfounded, but that’s the point - if there’s no effort for absolute transparency and education about something that affects millions of people then it automatically leads to mistrust which is harmful and a failure on the part of those responsible for communicating it.

While the NHS data will just be used to improve care

I would consent to this.

And companies might use the data to stratify their marketing more effectively

I would not consent to this.

I have more control over what a random website collects about me than I do my medical records?

@Shitfuckcommaetc

I don't think many of you truly understand what you're opting out of here, and how it could in future be detrimental to your care.

Shehasadiamondinthesky makes a very good point in her post

It really won't be detrimental to anyone's care.

I'd be interested to hear an example of how you think it would be.

I'm off out now so not ignoring replies btw.

All you people who object - how many of you have loyalty cards like Nectar, use Facebook and other social media?
Big brother already knows all about you, by name.
Having your anonymised health record made available for research into demographics and for other reasons won't add all that much to what Big Brother(s) already know about your lives.

@MrsFin it’s the ‘and other reasons’ I have issues with.

It’s a weak argument to compare social media etc. to information held by a public body, especially when it seems that the private sector running those social media organisations offer much more transparency than what is being offered in this scenario. If I log onto face book or sign up for a loyalty card I’m immediately (and effortlessly) presented with terms and conditions and the opportunity to opt in and out of various things.

I fail to see how this has reached the same standard. I don’t think my expectations are too high here.

@SmiledWithTheRisingSun but it’s not sharing medical records. It’s sharing elements of data to inform future medicine/healthcare. I’ve taken part in research studies but there’s so much more that can be done.

@MrsFin

All you people who object - how many of you have loyalty cards like Nectar, use Facebook and other social media? Big brother already knows all about you, by name. Having your anonymised health record made available for research into demographics and for other reasons won't add all that much to what Big Brother(s) already know about your lives.

I work in marketing. I know exactly what and how data is used. I do not use any social media using my full name or personal information, I do not use store cards or anything else that I would have to hand over my data for.

More people should educate themselves on how their data is collected, stored and used.
Threads like this are a good start of this.

@MrsFin

All you people who object - how many of you have loyalty cards like Nectar, use Facebook and other social media? Big brother already knows all about you, by name. Having your anonymised health record made available for research into demographics and for other reasons won't add all that much to what Big Brother(s) already know about your lives.

Nectar, Facebook, Tesco, Boots, etc. don't know about my history of mental health problems, eating disorders, pregnancy, miscarriage, abortion, domestic abuse, or substance abuse.

Not really even slightly the same thing, is it?

You'd be surprised. Maybe not the details, but enough.
They can tell when you'reunwell because your shopping habits change.
I'd suspect they'd have a pretty good idea whether or not you have an eating disorder.
They know when your period is due, and will send you special offers just before it.
They will often know before you do that you're pregnant, because you're late buying tampons.
They'd know if you have hay fever, incontinence, if you're following a special diet for either medical or ethical reasons.
They know when you're about to go on holiday, or are on holiday/away from home.
I think the lifestyle data that companies like Nectar, on behalf of Sainsbury's, know about you has a far more far reaching effect on your life than any anonymous data the NHS sell to a research company would.

I won't be opting out because my job literally depends on health data being shared for research and planning purposes.

It's completely overhyped as 'selling data to be marketed to'. That's absolutely definitely not the purpose. The problem is GPs are all individual businesses who own their patients' data. Then you have Public Health, Social Care and Clinical Commissioning Groups all trying to plan ahead for patient care. The hospital data isn't linked to GP data except when the Commissioning Support Unit requests the data for a specific purpose. So 'the NHS' as a single source of data doesn't actually exist. This plan is LONG overdue to help join up all the different pieces of primary care to plan for the future.

I tried to complete the learning disabilities self assessment framework and it was an absolute nightmare data wise. Which means people with learning disabilities literally can't get the best care because getting the data to understand need, supply and demand is hugely resource intensive.

If you're happy with some of the most vulnerable people in our society being unable to have the most appropriate care because the data simply isn't there to plan the services to help them then go ahead and opt out. Hell, if you don't want services for YOU researched and planned with the right data then go ahead.

I use that data and I can assure you we don't sell it, leak it or abuse it. We use it to research and plan current and future services.

@MrsFin

You'd be surprised. Maybe not the details, but enough. They can tell when you'reunwell because your shopping habits change. I'd suspect they'd have a pretty good idea whether or not you have an eating disorder. They know when your period is due, and will send you special offers just before it. They will often know before you do that you're pregnant, because you're late buying tampons. They'd know if you have hay fever, incontinence, if you're following a special diet for either medical or ethical reasons. They know when you're about to go on holiday, or are on holiday/away from home. I think the lifestyle data that companies like Nectar, on behalf of Sainsbury's, know about you has a far more far reaching effect on your life than any anonymous data the NHS sell to a research company would.

Agree people should be aware of what can be deduced and be much more cautious. I have always made efforts to retain privacy where possible. It isn't a black or white thing, there is a sliding scale.

Well said Because

The problem is that by opting out you make it impossible for researchers to see data. For example, if someone thought that mental health problems occurred more frequently in deprived areas, and wanted to argue for better mental health support and funding in those areas. They’d be asked to prove it, and without the data, they couldn’t. So there’d be no extra funding.
Opting out is, in my view, signing up to a cost cutters charter.

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

Many good points put forward re the strange comparison to social media and store cards. I don't have store cards but the only social media I have is anonymous and tells people nothing.

There's a full on explanation of what you are agreeing to with social media as well. The NHS aren't doing a great job of inspiring trust here.

Here here @BecauseMyRingBurnsSheila well said!

The misinformation being spread on this thread is frustrating... almost as bad as the anti vaxxers

Not bothered. They can use what they like.

I’m not against my anonymised data being used to forecast healthcare needs and develop services. There’s probably enough data about me from whatsapp/strava/all the crap on my phone that’s being farmed.. at least this is for the greater good.

@BecauseMyRingBurnsSheila and @ChelseaChop so in your what’s your opinion (as professionals) on the communication with the public on this? Do you really think it’s being optimal?