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

Peas from your contact

"Thirdly, this is the application of an incredibly extensive public and professional consultation that took years and completed in 2013. It cost the NHS about 10 million in PR alone. "

This is exactly my objection. Think how many people in pain, on waiting lists, could have benefited from that 10million on "PR alone!"

There have been massive advances in medicines without asking for complete records from people.

If anything, your contact's comments make me even more convinced the NHS is money down the drain. Other countries also make advances in medicine without an NHS equivalent.

Yes I have opted out separately at my GP and hospital trust

Paranoia, hyperbole and misinformation always abound on these threads, the need for health research for new drugs and treatments seems to lost in the midst.

Our family sign up whenever, we are asked to take part in research projects (which has been regularly) - like the Twins Early Development Study, 100,000 Genome Project, newish drugs, you name it. Its not like it's a binary choice between helping research or not!

It's the government I don't trust!

@mindutopia I think the issue is that although our data is shared by companies, and they know a lot about us, the NHS IT systems have a history of not being secure or working properly. The rarely employ the top data specialists (because the salaries are too low compared to Google or Amazon) so we end up with a clunky system at best and an intrusive one at worst.

It's all very well saying it s all anonymous- until it goes wrong.

I don't care. The data is anonymised and there are strict rules about how it is used.

If you are worried about this sort of thing, the ICO is doing a consultation right now on guidance about anonymised and pseudonymised data. Respond if you have views here: ico.org.uk/about-the-ico/ico-and-stakeholder-consultations/ico-call-for-views-anonymisation-pseudonymisation-and-privacy-enhancing-technologies-guidance/

I should say though that the doctor never sees me except to do smear tests. If I had multiple medical issues I might be more circumspect but as things are, even if the data was traced back to me, there wouldn't be much there.

[quote looptheloopinahulahoop]I don't care. The data is anonymised and there are strict rules about how it is used.

If you are worried about this sort of thing, the ICO is doing a consultation right now on guidance about anonymised and pseudonymised data. Respond if you have views here: ico.org.uk/about-the-ico/ico-and-stakeholder-consultations/ico-call-for-views-anonymisation-pseudonymisation-and-privacy-enhancing-technologies-guidance/[/quote]
There always are rules- until someone makes a mistake.

@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, this is different.

The last opt out (IIRC) was in respect of your medical records going on a national database rather than just within your local area.

This - fairly unpublicised options related to your anonymised days being used for research & scientific purposes

@DappledThings

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.

Same 😂 don't LOVE it but also don't really care.

If Big Pharma wants to pay for information about my toe nail fungus then the government is quite welcome to sell it.

In all seriousness, no, I am not going to opt out and I hope most people don't.

the NHS IT systems have a history of not being secure or working properly.

Exactly this. I don’t trust them not to cock it up. They’ll have all the policies that sound good, but the actual execution will leave a lot to be desired. Much, much more worried about SNAFU than an actual conspiracy (I’ve worked in various civil service depts.....).

*No, this is different.

The last opt out (IIRC) was in respect of your medical records going on a national database rather than just within your local area.

This - fairly unpublicised options related to your anonymised days being used for research & scientific purposes*

Ah ok, thanks.

Last year, I had a letter from some sort of body doing research that were after people with a particular diagnosis.

It did say that I had been "identified as someone with xyz conditions". I had not seen my GP for a long time prior to this... so they had medical information about me, along with knowing my name and address. How would this have happened if everything is meant to be anonymised etc?

@XenoBitch / that’s not great