Poll NHS Opt Out

[tek-monkey]

So if we don't want our medical data 'used in research' we have to opt out? Fair enough, it's very important to be able to research but a patients records contain private info. This is a personal choice, I'm fine with that, and they promise to anonymise your data where possible.

Looking at who they'll give it to is a bit vague, and who'll they'll decrypt it again for even more so (just where legal, and who knows what laws will apply to it). But then you look a bit further and realise there's a section on when they will ignore your decision and share the data regardless against your wishes, and one of those clauses is when they have anonymised it first?

So you aren't opting out of your data being used, you're opting out of them being allowed to share it's you the data is about. Some won't care, some will, but you cannot take it back once it's out there whereas you can always choose to share it at a later date. I have many problems with this, but I'm curious if anyone else does and nobody I've spoken to recently seems to care.

https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/

 

[Lucy]

I've opted out. Using my data for research is important but it has to be anonymised for the research to be fair I'm sure.

 

[tek-monkey]

My main fear is I know the sort of uses I'd put the data to, so am sure they've thought of worse! Just annoys me that they make out that you are opting out of helping, when in reality they will still use it for those purposes anyway.

"Information about your health care or treatment might still be used in research and planning if the information that can identify you is removed first."

 

[Gramaisc]

Using as much information as possible for the good of mankind is clearly a great idea.

Having people from the UK's current kleptocratic junta involved in any way does not give me any confidence that it would be done competently or with financial probity.

 

[BobClay]

It isn't that I don't like the idea of providing data for research .... but trust this bunch of wankers not to be lying through their teeth ..??? NO THANKS.

 

[littleme]

I had no idea of any of this? Holmcroft surgery.... Anyone else from there had any info?

 

[tek-monkey]

I had no idea of any of this? Holmcroft surgery.... Anyone else from there had any info?

I'm at stone Road, they sent out a text the other day. I believe there were rumblings that the plans weren't public enough, so the deadline got extended and they had to contact people.

Of all the things that got pushed back because of the pandemic I wonder why this was chosen to go ahead?

 

[BobClay]

I know I tend to be very cynical about the things this 'government' supports. (cough.) But I'm of the opinion they're guided by one thing ... and one thing only. I believe ABBA stated it best: ...

 

[staffordjas]

I saw a warning on google news about it the other week. Other than that had nothing from the GP surgery .

 

[c0tt0nt0p]

Hilarious really *facepalm

 

[proactive]

https://digital.nhs.uk/data-and-inf...planning-and-research/transparency-notice#top

Believe what you will. The link beneath is to the form to fill in, in order to opt out.

https://nhs-prod.global.ssl.fastly....lanning-and-research/type-1-opt-out-form.docx

 

[tek-monkey]

https://digital.nhs.uk/data-and-inf...planning-and-research/transparency-notice#top

Believe what you will. The link beneath is to the form to fill in, in order to opt out.

https://nhs-prod.global.ssl.fastly....lanning-and-research/type-1-opt-out-form.docx

From that link:

It is therefore possible for NHS Digital to convert the unique codes back to data that could directly identify you in certain circumstances, and where there is a valid legal reason which permits this without breaching the common law duty of confidentiality. This would include:

• where the data was needed by a health professional for your own care and treatment
• where you have expressly consented to this, for example to participate in a clinical trial
• where there is a legal obligation, for example where the COPI Notices apply - see Our legal basis for collecting, analysing and sharing patient data above for more information on this
• where approval has been provided by the Health Research Authority or the Secretary of State with support from the Confidentiality Advisory Group (CAG) under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 (COPI) - this is sometimes known as a ‘section 251 approval’

Got no issues with most of that, just point 4 I'm dubious about. But points 1, 2 and 3 will apply regardless, opting out has no effect on those?

Where a patient has set a national data opt-out it does not stop that patient from giving their consent for a specific use of their data. It is important that patients continue to be offered the opportunity to participate in medical research studies, provided this is done in a way that does not breach their confidentiality, i.e. it addresses the Common Law Duty of Confidentiality.
https://digital.nhs.uk/services/dat...and-the-application-of-national-data-opt-outs

There are already a number of exemptions, Public Health England and ONS for example get your data regardless. The university of Oxford also seem to have some exemptions to the rules but not all the time, and there is someone called Genomics England who also got access to limited identifiable info despite opt outs. And the care quality commission, and in one case Derby council got an exemption too. So even opting out doesn't really mean your data is safe I guess, I'm starting to wonder what the point is. The illusion of choice?

I'm mainly opting out because with someone like Truss running the NHS there's a good chance she'll be favourable to people like her husband who want to get rid of the NHS, and your data is worth a fair amount to them.