To ask if you are opting out of the NHS Digital data-sharing programme?

[Weepies]

Just read about this today tbh. Not too surprised it's not well advertised, because it's not in the data-sharing programme's interests to have everyone opt out. Data is the new oil...

'Your medical records are about to be given away. As GPs, we’re fighting back': GPs in England have been told to hand over all patient data to NHS Digital – potentially to be exploited for corporate profit.

On balance, there is a myth buster on NHS Digital too: 'The national data opt-out is a service that allows patients to opt out of their confidential patient information being used for research and planning.'

Personally, I'm trusting the professional opinion of GPs who have a duty of care to their patients. If you've also read Ben Goldacre's book "Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients" then you might understand why there's a legitimate concern; too many vultures seeking to make a quick buck at the expense of patients' misfortunes. It's a slippery slope. So, I'm opting out.

YABU - for not opting out

YANBU - for opting out

I opted out of something years ago. Had to fill in a form and deliver it to GP. Is this the same thing?

They'll just go ahead and do it anyway. Do you honestly think they're going to keep tabs on who's opted out? I opted out of something a few years ago and they ignored it.

@mybrainhertz

They'll just go ahead and do it anyway. Do you honestly think they're going to keep tabs on who's opted out? I opted out of something a few years ago and they ignored it.

You're probably right. And that is depressing.

Whatever happened to medical ethics?

Money comes before ethics. I'm assuming someone will be paid for all this information.

Bumping with a Guardian article.

Duh, sorry, same as OP.

Nevertheless, there’s still time to opt out

@XenoBitch

I opted out of something years ago. Had to fill in a form and deliver it to GP. Is this the same thing?

No, it's new

This thread will give more info, hope it helps

www.mumsnet.com/Talk/am_i_being_unreasonable/4259046-did-you-know-that-the-nhs-is-about-to-share-all-your-medical-records-without-your-consent

Yes I am opting out

For me it's like the kerfuffle around mandatory national ID cards that was around a few years ago. It feels like something I ought to be bothered about but I'm not. So I'm not bothering opting out. Nor would I object to an ID card as long as it was free.

Yes I will be opting out as I think we should do everything possible to hinder research and planning for the future health care needs of the nation.

I am part of a long term research study, 25 years plus, I had a comprehensive explanation from them about it. From that, I see no reason to opt out and therefore won't be.

Yes I will be opting out as I think we should do everything possible to hinder research and planning for the future health care needs of the nation

Given the NHS rationing and ever lengthening waiting lists, planning for future health care needs seems like a fantasy? Operation Cygnet springs to mind?

YANBU. Opting out and will be very happy to support legal action if the government do not honour the opt-outs.

If you opt out you should be ineligible for any advances in medical care that arise from research. How do you think research happens? If enough people opt out it will render the data useless for granular research that takes account of things like deprivation, ethnicity, age, disabilities etc.

That's my view. However, I know a lot about this as I worked in that field a few years ago. The reason this is so under the radar is that it is pretty much a direct replacement for care.data. Do you remember that? Big news story about 5/6 years ago that garnered so much negative press it was 'cancelled' then quietly replaced by this GP extraction.

NHD Digital have robust measures in place to ensure the data is only used for suitable purposes but in reality these decisions are subject to human subjectivity. If you peruse their register of organisations that have received data it is pretty shocking. Most are valid uses but a lot are commercial companies reselling the data packaged into dashboards and intelligence. Selling it back to the NHS in many cases. I am aware of one incidence of our data being sold to an insurance organisations for an 'academic exercise' to look at premiums, but that predates the disclosure register.

Despite this, on balance, I still choose not to opt out as honestly, no one is looking at your data as an individual. It's trends and patterns overall that are of interest. The research that wants to look at you as an individual will gain your explicit consent to do so eg clinical trials etc.

rapidradish I do think that's naive. Before long we'll be seeing people having higher insurance premiums automatically because of medication they've taken in the past, for example. People who shrug and say it doesn't worry them may well come to another view when they are targeted by diet companies who have discovered their bmi, or prevented from getting a job due to their alcohol consumption, or have their driving licence removed due to something they've disclosed...the possibilities are endless.

And they will happen, because money trumps all in the end - and that's not even getting started on simple failures of data security. Plus there's every likelihood that these will be labelled 'for your own good' or 'for the good of society' or 'to keep everyone safe' and these tropes are guaranteed to get everyone on side in today's mindset. It won't end well. I'll be opting out.

I'm not opting out. We use this type of data at work and it is absolutely essential for monitoring things like rare adverse drug effects and links between particular health outcomes and behaviours

‘Data is the new oil’ - yet you registered for a mumsnet account.

Of course it should be 'data are the new oil'

Please don't opt out. Health researchers use these data to generate evidence to back important decisions in healthcare. We wouldn't know, for example; what the early symptoms of cancer are, without having access to anonymised health records. It's ultimately for patient benefit.

Given that this Government awarded multiple contracts to Palantir for Covid related NHS services, then yes I am opting out.

I've opted out. It's not medical ethics that's the problem, but commissioning and procurement managers, who are instructed by government.

Just posted elsewhere
I've arrived home to a letter saying I'm 15 months overdue on smear test. This is wrong.

It also says I've been selected to get a test kit as part of a pilot.

There's no way listed to correct the info or opt out.

Wonder what other info they have wrong.

I once got a letter saying I needed to see a specialist - error, though
I think it was attempting to disguise research. And a letter about an apparent addiction to sleeping pills when I had had a prescription of 10 while doing uni exams. It was two years or so after the exams.

So should I laugh that the data they are flogging is wrong?

@Ostara212

Just posted elsewhere I've arrived home to a letter saying I'm 15 months overdue on smear test. This is wrong.

It also says I've been selected to get a test kit as part of a pilot.

There's no way listed to correct the info or opt out.

Wonder what other info they have wrong.

I once got a letter saying I needed to see a specialist - error, though
I think it was attempting to disguise research. And a letter about an apparent addiction to sleeping pills when I had had a prescription of 10 while doing uni exams. It was two years or so after the exams.

So should I laugh that the data they are flogging is wrong?

Well, they can’t make you go, can they?

I’m not, no. I work in clinical research and am quite happy for my anonymised clinical records to be shared. There is nothing identifying in there.

As someone whose job involves data protection, I already know we are all already consenting to sharing so much more for no good reason via Google and social media and our Tesco Clubcards.

Pumper they're not asking me to go anywhere.

You might want to read the post.