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.

Obviously had a sentence mash up moment there! *in your professional opinion....

[quote Cornettoninja]**@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?[/quote]
No it's not optimal at all. In fact the first time they tried to do this I was aghast at the poor communication of it. The £££ spent on Covid messaging shows if they want to do something they can and will do it. This is not exciting news in the slightest. And perhaps not messaging they think people won't opt out. But if they employed behaviour analysts on this they'd know no communication means people fill the gaps with half truths and conspiracy theories. So sell the positives (better targeted services/ future care funding) or warn about the negatives (money wasted/non existent services). Or get people like me and a few others on the thread to explain it, one forum at a time.

And honestly if you knew the hoops I need to jump through to get anonymised data (not even pseudonomised) you would be 100% sure your data is safe.

@Moraxella

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.

I am. The resources that go into "forecasting" while current severe health problems struggle to get attention....

The priorities are completely wrong, the funding needs reallocating and we need to stop throwing money at it and think how it gets used.

Sadly no party is interested in removing the useless senior non clinical staff. The head of the Royal Society of Arts is about to take over as the head of the NHS Confederation. How many staff there? How many doing anything to relieve the backlog at A&E, that we've had for 20 years maybe?

And guess who sponsors the annual conference... it's Palantir!

www.nhsconfedconference.org/welcome?utm_source=confed_listing&utm_medium=banner&utm_campaign=conferencebook&utm_content=mpu

@Cornettoninja totally agree with you- poor comms definitely

To @Ostara212 denigrating non clinical staff, with respect you clearly have no idea what they do. The NHS could not function without these staff. It’s nonsense to say that the NHS would function better without mgt and more Doctors, Nurses and AHP. It wouldn’t, I promise you.

The NHS is one of the largest employers in the world. It’s up there with MacDonalds. It might not be perfect, but it is a well oiled machine and extremely cost effective (we pay the least for generic medicine thanks to the back office staff, for example).

Having an effective management and administration workforce is the reason why we have been able to roll out the vaccines so quickly compared to other countries. So please don’t dismiss the important work these people do in planning and commissionBig, procurement, contracting, research. All absolutely vital in ensuring you and your loved ones get the best care.

Clinical staff are vital, but they wouldn’t function without the non-clinical staff!

Chelsea

I apologise. I should have been clearer. Senior blue sky thinkers are not essential to the NHS.

Admin staff mostly are essential. The CEOs with their strategic overview....how long could they be off work before anyone noticed or a patient was affected?

One of the problems of the NHS is the vastness. And, no those jobs do not ensure me and my loved ones get the best care. I've been the victim of a fishing expedition which was basically "research", my mother was advised to take a medication she is alergic to while in hospital and the family had to kick up a stink.

my 91 year old great aunt can't see a GP at the best of times but now, no way.

The nurses and HCPs are always run off their feet. At some point, someone has to do a prioritisation exercise on the NHS. The precautionary principle is informing a lot of "research" while cancer patients have treatment delayed.

I haven’t read all the posts, but here’s a link correcting most of the inaccurate ‘myths’

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

@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.

This is absolute crap.

I had a text from the NHS yesterday saying that as I’d been identified as “high risk” I could bring forward my 2nd Covid vaccine to ASAP... this is the first I knew of being “high risk”. I looked in to it and, it seems my health data has already been shared with several companies to undertake risk analysis for Covid. There are 6 or 7 categories of increased risk and, because I don’t have any of the other issues, I’m assuming that because I had cancer treatment in 2019, and a cancer investigation operation last year (nothing sinister found), that’s why my risk is higher. I was ‘interested’ that all our health data has obviously already been shared...

A few years ago Pharmacy2U were find by the ICO for selling patient data to marketing companies including a dodgy Australian Lottery company, it was the BMA who actually wanted the ICO to prosecute them, I would like to think that they would take the same stance with any NHS departments doing the same thing

@Oldsu

A few years ago Pharmacy2U were find by the ICO for selling patient data to marketing companies including a dodgy Australian Lottery company, it was the BMA who actually wanted the ICO to prosecute them, I would like to think that they would take the same stance with any NHS departments doing the same thing

The BMA represent doctors though and probably NHS workers

I don't know who wpuld take the NHS to court. Private prosecution might be needed.

Thanks @ChelseaChop and @BecauseMyRingBurnsSheila. In the interests of transparency I’ve only recently left the NHS after over a decade, I know generally staff are shit-hot on data protocols and err on the side of caution, but I maintain that reassurance on an anonymous forum isn’t worth much. I’ve done it myself but realistically I have to accept I don’t know and am ultimately unaccountable.

My issue is with the ambiguity of some of the wording and what that means in practice now and in the future. The clarification around the fact you can’t withdraw data once it’s passed on and out there (obviously) means my issue is magnified. Ambiguous references to ‘third parties’ don’t inspire me to trust that I would necessarily know if there was a shift in direction to a point I would actively wish to withdraw. From their own wording there’s no obligation to seek my consent personally or widely publicise anything, they’ve basically got free reign. Basically I want free access to my terms and conditions and to be actively notified when they change if we’re using commercial set-ups as a comparison.

My personal experience within the NHS has given me an insight into the layers this will have gone through and quite frankly I haven’t experienced many examples where I feel that advocating for us (as in the general public) is even on the radar for many of the people drawing up these policies and plans and that concerns me, especially in examples like this. I don’t relish finding myself on the same side as conspiracy but I can’t ignore my own reservations.

Morally, I’m not comfortable with the notion that silence is consent (I have similar feelings over the changing of organ donation protocols despite the undeniable good it has the potential to do) . I can see the benefits absolutely and appreciate the mammoth task it is to hold an entire populations data but I don’t accept this is the best the NHS can do as an organisation that should first and foremost be accountable to the people.

I support the NHS having access to my data but I absolutely do not agree to 3rd parties. We have a very poor record regarding data privacy and I do not trust the government at all as they are interested in privatising the NHS. Google Health and pharmaceuticals can run rings around them and our data will be used and abused. Pharma will use it to their advantage not the NHS’s.
I don’t use my real name or date of birth for anything shared with commercial companies. I have a separate email. I use very limited social media. Until we have more robust protections I will opt out.

And fully agree with this post by @JollyAndBright.

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.

Carped Interesting. I recently had letters from the water and electric company saying I'd been identified as a vulnerable customer. It was addressed to the occupier, they might have meant the previous occupant as I know she had health problems that I don't. But either way, something has gone on there.

Cornetto

Recognising several layers of bureaucracy doesn't make you a conspiracy theorist, just a realist. The NHS is too big to be efficient. Patients would be better served by decentralisation IMHO.

I looked at my surgery website to see if there were any notices up about this data. It's now become some faceless NHS site with no information about the practice.

Re the "silence as consent" - agree, it's a very dangerous precedent.

My sister moved recently and had to change surgeries. The volume of junk calls to a new telephone number puzzled her because the only place who got that number, rather than the mobile, was the surgery. I think we might have solved the mystery.

A GP’s point of view:
inews.co.uk/opinion/nhs-data-shared-third-parties-weeks-opt-out-gps-worried-1028042

I think a key aspect to bear in mind is that this has been very poorly publicised and one reason surely sticks out a mile - i.e. they want to minimise objections/refusals. My principal objection is that I simply don't trust the NHS to protect itself effectively from data breaches. Their IT systems are outdated, doubtless understaffed just like the rest of the NHS, located God knows where with better or worse system and data protection methodologies and "expertise" in charge of it. Bad enough having my so-called anonymised data being sold on - and I take the point of previous posters about identifiability despite anonymisation. But tempting foreign hackers to access my medical records as part of a major data heist once it's all to play for in one "unified" system? I don't think so. I'm filling in the forms to say NO.

Thanks for that article @MMMMMaria. It echos quite a lot of my concerns.

If I’m being generous and believe that all of this has been worked on with the best of intentions it still doesn’t soften the fact that there is no basic respect for peoples rights surrounding what is one of the most personal and private sets of data in existence about them. It feels like there’s been a lot of presumptions made about what is for people’s own good and that’s just not good enough.

I've lost interest in writing to MPs but worth doing here I guess.

Tower Hamlets doctors say - YANBU.

www.theguardian.com/society/2021/jun/01/gps-urged-to-refuse-to-hand-over-patient-details-to-nhs-digital

Thanks for sharing this - I've not heard anything about it until now, but this is horrific. What happened to doctor/patient confidentiality?

@PurpleMonkeyDishwasher86

Thanks for sharing this - I've not heard anything about it until now, but this is horrific. What happened to doctor/patient confidentiality?

I guess we have to fight for it. I'm ready! I shouldn't have to be, but I am.

fullfact.org/health/nhs-data/

There really isn’t a good reason to opt out. Your personal data is NOT being shared:

“ The data collection won’t include people’s names or where they live. Of course, that’s not the only information that can identify someone. Other details, like NHS numbers, postcodes and dates of birth, which can identify people, will go through a process called pseudonymisation, which means codes will be generated to replace these details.”

@PurpleMonkeyDishwasher86 that’s not what is happening at all, please educate yourself rather than listening to the scaremongering on here

I find it ironic that posters have chosen to share personal medical information on a forum which is tracked by your apps, google, social media and data owned/sold by mumsnet. But you don’t want your care provider to improve data analytics for the purpose of improving care and efficiency.