National News Your NHS data - up for sale?

[ZeroTheHero]

Are you happy for *all* of your NHS data to be shared with all and sundry (anyone the government says is OK, whether for research or commercial gain)? If not, then you have until 23rd June to opt out. If you don't opt out, you cannot have your data removed later.

This is an 'update' on the Care.data scheme they tried some years ago which was abandoned due to privacy concerns, but this one has more extensive disclosure of your data and no real privacy checks at all. It has been snuck out under cover of Covid and announced (very quietly) the day after the Queen's speech.

There are two forms you have to complete:

- Type 1 for GP based data ( the data to be grabbed). Download, print, complete, post form from

https://nhs-prod.global.ssl.fastly.net/binaries/content/assets/website-assets/data-and-information/data-collections/general-practice-data-for-planning-and-research/type-1-opt-out-form.docx

Keep a copy, post to GP with Certificate of Posting or registered mail if you don't have absolute trust, Alternatively hand deliver & get them to sign or stamp your copy.

- Type 2 for National data (hospital, clinics etc) data. Download, print, complete post form obtained from

https://assets.nhs.uk/nhsuk-cms/documents/Make_and_manage_your_choice_PDF_108kb.pdf#page=3&zoom=auto,-16,798

Post to the address on Page 4 with Certificate of Posting or or registered mail if you don't have absolute trust.

Alternatively you can do this online at https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/

Note: If you want to do this, don't leave it until the last minute as you may have to post/deliver one or both of the forms.

As always, do your own research and decide for yourself if you are happy with this rather than believing some football message board random like me!

Here are a couple of links - one is the Financial Times, which is a pretty good source I'd have thought?

'Biggest data grab' in NHS history stuffs GP records in a central store for 'research' – and the time to opt out is now

'More data, more breadth, more depth... it's the whole f&*king deal'

www.theregister.com

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

www.ft.com

 

[Manorlounger]

Are you happy for *all* of your NHS data to be shared with all and sundry (anyone the government says is OK, whether for research or commercial gain)? If not, then you have until 23rd June to opt out. If you don't opt out, you cannot have your data removed later.

This is an 'update' on the Care.data scfeme they tried some years ago which was abandoned due to privacy concerns, but this one has more extensive disclosure of your data and no real privacy checks at all. It has been snuck out under cover of Covid and announced (very quietly) the day after the Queen's speech.

There are two forms you have to complete:

- Type 1 for GP based data ( the data to be grabbed). Download, print, complete, post form from

https://nhs-prod.global.ssl.fastly.net/binaries/content/assets/website-assets/data-and-information/data-collections/general-practice-data-for-planning-and-research/type-1-opt-out-form.docx

Keep a copy, post to GP with Certificate of Posting or registered mail if you don't have absolute trust, Alternatively hand deliver & get them to sign or stamp your copy.

- Type 2 for National data (hospital, clinics etc) data. Download, print, complete post form obtained from

https://assets.nhs.uk/nhsuk-cms/documents/Make_and_manage_your_choice_PDF_108kb.pdf#page=3&zoom=auto,-16,798

Post to the address on Page 4 with Certificate of Posting or or registered mail if you don't have absolute trust.

Alternatively you can do this online at https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/

Note: If you want to do this, don't leave it until the last minute as you may have to post/deliver one or both of the forms.

As always, do your own research and decide for yourself if you are happy with this rather than believing some football message board random like me!

Here are a couple of links - one is the Financial Times, which is a pretty good source I'd have thought?

'Biggest data grab' in NHS history stuffs GP records in a central store for 'research' – and the time to opt out is now

'More data, more breadth, more depth... it's the whole f&*king deal'

www.theregister.com

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

www.ft.com

I have a notion that our previous surgery informed us of this and we had the option then to opt out, that by side, we will still go online and make sure we are opted out.
The last thing any of us need are yet more cold calls, emails and texts trying to flog us more crap.
I would have thought that existing data protection laws would prevent this sort of intrusion but, one never knows.

 

[ZeroTheHero]

We also remember being asked a few years ago - that was for the Care.data version of this which collapsed. From what I have read, whatever you said then has no bearing on this attempt, if you don't opt again out your data will be used.

It's not that I would personally object to my anonymised data being used for public research (I'd hope that was being done already), but this 'initiative' isn't that.

 

[RyanioBirdio]

I would have thought that existing data protection laws would prevent this sort of intrusion but, one never knows.

Many of our data protection laws were burned when we left... you know.

 

[Essexyellows]

Personally, I would be more concerned about how your data is shared and stored within the NHS let alone outside of it!
Easy enough to opt-out using the link provided.

 

[Oxymoron]

The horse's mouth version

 

[ZeroTheHero]

The online link does *not* opt you out of the transfer of the data from your GPs surgery. For that you need the first link - then download the form, fill it in and post/delivery it to your GP surgery.

 

[bazzer9461]

It’s bad enough that your phone number can be sold to 3rd parties to contact you and ask things like” we see you were in an accident “

 

[Essexyellows]

The online link does *not* opt you out of the transfer of the data from your GPs surgery. For that you need the first link - then download the form, fill it in and post/delivery it to your GP surgery.

They won`t find much interesting there for me that they don`t know already............. most of my interesting stuff is on clinical trials databases and mostly anonymised.

Aside from that folk might find these links helpful.

Choose if data from your health records is shared for research and planning

Find out how data from your health records can help with research and planning, and choose if you want to share your data.

www.nhs.uk

General Practice Data for Planning and Research (GPDPR) - NHS Digital

NHS Digital’s daily collection of GP data will provide data to support vital health and care planning and research. selling, data, opt, out, 23 june, sale, being, sold, gpdpr, general practice for planning and research, Type 1, sell my, form, gp, sharing, opting, collecting, Your optout, scrape...

digital.nhs.uk

 

[beyondthefourth]

I won't opt out of this, as it's not personalised data that's being sold to corporations. It's for medical research and studies (e.g. how many people over 40 in your surgery have diabetes, etc). It's coded and not for nefarious purposes.

 

[Wallop]

The horse's mouth version

Well done - please watch this and don’t believe the bullshit served up by the media in an attempt to sell newspapers/increase clicks.

 

[ZeroTheHero]

I won't opt out of this, as it's not personalised data that's being sold to corporations. It's for medical research and studies (e.g. how many people over 40 in your surgery have diabetes, etc). It's coded and not for nefarious purposes.

It's coded. But it is coded in a way that is reversible - for any reason the government feels is legal. And yes, the data can be sold to 'big pharma' if that's deemed appropriate.

But (as I said) everyone owns their own data and has to decide for themselves. The post was to let people know this is happening in case they didn't know (I certainly didn't) so they can make their own minds up - your data being used this way *without your positive consent* is IMO a very bad thing.

 

[Oslernorth]

I won't opt out of this, as it's not personalised data that's being sold to corporations. It's for medical research and studies (e.g. how many people over 40 in your surgery have diabetes, etc). It's coded and not for nefarious purposes.

If that’s true then fair enough.
Data harvesting will be the next big battle over this decade as people realise how deep the dangers go towards every day life.

 

[Essexyellows]

Data is the new money you know...........................

 

[Oslernorth]

Sad but true

 

[Oxymoron]

On hold - for now

New NHS patient data store delayed by two months

The creation of a central store of data from GP records in England had been due to start on 1 July.

www.bbc.co.uk

 

[OUFCGav]

"mostly anonymised" - mostly means it is not anonymous at all then. Given this will be made available to 3rd parties then needs to be more than mostly. Once the data is out there without a ringfence it will be used for more than just health study. Your insurance company wants to analyse effects of middle aged diabetics on their claim rates - some people will suddenly find their premiums going up.

 

[RyanioBirdio]

Data is the new money you know...........................

Absolutely this.

I wonder if any countries who are particularly hot on data might be asking for access to certain types of data as part of trade talks. A little sweetener, if you will.

 

[OUFCGav]

Absolutely this.

I wonder if any countries who are particularly hot on data might be asking for access to certain types of data as part of trade talks. A little sweetener, if you will.

That and more visas.

 

[Manorlounger]

Absolutely this.

I wonder if any countries who are particularly hot on data might be asking for access to certain types of data as part of trade talks. A little sweetener, if you will.

Some countries don't bother asking!