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NHS data sell off

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By (user no longer on site) OP   
over a year ago

What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!

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By *ittleAcornMan
over a year ago

visiting the beach


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!

"

That's not an entirely accurate summary, though that's not to say I am happy with this.

The plan (which has been postponed) is for all GPs to copy all of your records centrally to NHS Digital.

The idea being that this is incredibly important and useful data for health studies, which it is.

But it is also incredibly valuable data for insurance, health and other private companies.

This is the issue, where are the guarantees this data will not a) go "missing" b) be leaked c) be sold etc.?

I would like my data to be used to research and answer difficult questions about health. But I do not trust this government, nor the competency of NHS Digital. I have opted out for the time being.

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By (user no longer on site)
over a year ago


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!"

My option is people should take the time to read and fully understand the changes:

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public

It’s yet again another ‘story’ that the daily Mail and various social media posts have attempted to escalate into a huge civil rights issue which it definitely isn’t.

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By (user no longer on site)
over a year ago

It's no different to anything else really, there are data profiles of everything you do, phone calls, emails, social media, bank activity, your face is more than likely stored in a facial recognition database, if you have ever been in an incident involving the police your dna is stored, even for a caution, and you have to request that it gets removed after 5 years, they don't just do it... This is just one more possible step into everyones complete data being accessible.

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By *otJustSandMCouple
over a year ago

Leeds

I have done some work around Health Data and in the US it is a 5 billion dollar a year business. Now given that the US Health providers are circling round the 8% of the NHS that can be constitutionally privatised, it's fair to say that due diligence prior to any sale and contracting how much of that 5 billion is UK data?

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By *heBirminghamWeekendMan
over a year ago

here

Thread from earlier this year:

https://m.fabswingers.com/forum/virus/1164074

(which contains information from, and links to Digital.nhs.uk)

Also, an update from medConfidential - (medConfidential brings together individuals and organisations from all sections of the community, seeking to ensure that the case for confidentiality and consent in health and social care is strongly represented in the media, in the corridors of power and across the country.

We provide briefings for patients, medics, service users, care professionals and anyone concerned with care – as well as for the media, and in Westminster and Whitehall.):

“On 19 July 2021, the Government announced that the GP data upload in England will not start until after four tests are met – which will likely be some time in 2022 – but the Government has not said that you will hear anything from anyone directly about its plans, nor what (if anything) will have changed. As a result, we cannot guarantee that you will have any more information in August or September than you do now.

You do still have choices about what’s done with your data, but the Government has still not committed to directly telling everyone what it plans to do with NHS patients’ data – nor how everyone can exercise their own choices.”

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By *azylivingMan
over a year ago

random location


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!"

GDPR?

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By (user no longer on site)
over a year ago


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!"

The opt out is very simple and takes seconds to do on the ap.

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By *ittleAcornMan
over a year ago

visiting the beach


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!

The opt out is very simple and takes seconds to do on the ap."

That is true, but getting the app in the first place is a faff.

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By *ophieslutTV/TS
over a year ago

Central


"Thread from earlier this year:

https://m.fabswingers.com/forum/virus/1164074

(which contains information from, and links to Digital.nhs.uk)

Also, an update from medConfidential - (medConfidential brings together individuals and organisations from all sections of the community, seeking to ensure that the case for confidentiality and consent in health and social care is strongly represented in the media, in the corridors of power and across the country.

We provide briefings for patients, medics, service users, care professionals and anyone concerned with care – as well as for the media, and in Westminster and Whitehall.):

“On 19 July 2021, the Government announced that the GP data upload in England will not start until after four tests are met – which will likely be some time in 2022 – but the Government has not said that you will hear anything from anyone directly about its plans, nor what (if anything) will have changed. As a result, we cannot guarantee that you will have any more information in August or September than you do now.

You do still have choices about what’s done with your data, but the Government has still not committed to directly telling everyone what it plans to do with NHS patients’ data – nor how everyone can exercise their own choices.”

"

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By *uddy laneMan
over a year ago

dudley

Just thinking if the data is there In digital form, and you can retrieve your medical data could you create a NFT token with it making it non exchangeable.

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By *esmond and Molly JonesCouple
over a year ago

Watford


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!"

It's fairly simple to opt out. You do however as I understand it, and have done, opt out both from your GP AND from the NHS as a whole.

I understand one of the deadlines passed last month or so, so your info could have been sold on since then, but you can still opt out to stop any further selling off of your data.

Before the deadline, I did the opt out online on the NHS optout website (took about 2 minutes), and for the GP, I downloaded a template letter telling them I do not consent to my data being sold on which I signed and popped through the GP's post box.

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By *illen5Man
over a year ago

Bath

My medical records. Not someone else's to sell.

Don't believe it

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By *arry247Couple
over a year ago

Wakefield


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!

It's fairly simple to opt out. You do however as I understand it, and have done, opt out both from your GP AND from the NHS as a whole.

I understand one of the deadlines passed last month or so, so your info could have been sold on since then, but you can still opt out to stop any further selling off of your data.

Before the deadline, I did the opt out online on the NHS optout website (took about 2 minutes), and for the GP, I downloaded a template letter telling them I do not consent to my data being sold on which I signed and popped through the GP's post box."

At present is is illegal for your doctor to pass your medical records to anyone (even the NHS) without your permission. You do not have to opt out as the law prevents disclosure without permission

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By *appy 2 lickMan
over a year ago

lanarkshire

It's only happening in England just now I wanted to opt out but Scotland is not included and hopefully Wales is the same

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By *ola81Woman
over a year ago

pond

I opted out few months ago. Under the cover of virus they doing lots of damaging stuff to the nation. But is never on any news and when it is it's too late.

I do research my own stuff not into brain wash from public media.

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By *izandpaulCouple
over a year ago

merseyside

For me, I don't care as there isn't anything in my medical records that is much different to millions of others.

Chest and all the other day to day infections, odd surgery.

No long term meds, or anything exciting.

If my records could help research in any way I'm all for it.

I'd say most of my personal information including medical, banking, job, education, etc is all well documented anyway.

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By (user no longer on site)
over a year ago

I’ve already opted out of NHS Digital and also summary care records. My choice

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By *ittleAcornMan
over a year ago

visiting the beach


"For me, I don't care as there isn't anything in my medical records that is much different to millions of others.

Chest and all the other day to day infections, odd surgery.

No long term meds, or anything exciting.

If my records could help research in any way I'm all for it.

I'd say most of my personal information including medical, banking, job, education, etc is all well documented anyway.

"

I feel the same to a degree. However, there is no guarantee here that the data will be used only for that purpose. I do not want my data used to further the profits of the people already at the top of the food chain.

At present to do this they would have to anonymise the data (due to GDPR), so it could not be used to target individuals (increasing their insurance for example).

However, it's a stated aim of this Government to "replace" GDPR...

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By (user no longer on site)
over a year ago

I opted out

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By *axwellCouple
over a year ago

south lakes

NHS data sell off has been put on hold indefinitely..

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By *urplechesterCouple
over a year ago

chester

I’m in wales so can’t currently opt out, but I definitely will when I can! I would personally prefer an opt in approach, and a lot more information given to people about it to help with their decision, feels a bit sneaky tbh! But that’s just my view! Miss pc

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By *ynecplCouple
over a year ago

Newcastle upon Tyne

I have no problems with a centralised database it is a long time coming and should make things simpler in the long run.

I do have concerns with public bodies and their track record on data security plus I can see this database being high on the list of hackers targets as I imagine it will be very valuable.

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By *alcon43Woman
over a year ago

Paisley

It’s all a bit of a joke. Our NHS systems don’t speak to each other within the UK. Even the double vaccination QR codes in Scotland can’t be read in England. What hope do we have with digital medical records following us about.

Also I’ve temped in the NHS Scotland and adult mental health records at that time we’re not being digitalised. They are kept separate from their medical records.

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By *ig1gaz1Man
over a year ago

bradford

The data sell off has been put on hold for now.

The sell off of the covid collection test and trace details is another matter.

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By *ig1gaz1Man
over a year ago

bradford

Forgot the link to sell off being put on hold

https://www.fabswingers.com/forum/lounge/1169711#message_28788099

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By *uliette500Woman
over a year ago

Hull

The information that is available for research includes medical codes from your records only. It doesn't include anything personal you tell the the gp or even your name and identifying information.

Info they get from the system is all anonymous. Your medical records are all digital anyway and stored on the NHS data base.

If you opt out of sharing your record althogether you put yourself as risk as if you are admitted to hospital the doctors treating you can't see possibly vital information such as allergies etc. I'd be wary about opting out if I was you.

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By *ola81Woman
over a year ago

pond


"The information that is available for research includes medical codes from your records only. It doesn't include anything personal you tell the the gp or even your name and identifying information.

Info they get from the system is all anonymous. Your medical records are all digital anyway and stored on the NHS data base.

If you opt out of sharing your record althogether you put yourself as risk as if you are admitted to hospital the doctors treating you can't see possibly vital information such as allergies etc. I'd be wary about opting out if I was you. "

Those encrypted data can be revealed to organization who got permission means paid more

... like in US insurance companies having access to medical records putting prices up on your health cos they can see it all.

There is a high risk that in a future our data will be sell to insurance companies. Do you really trust your government... They don't care about ordinary people they only care about themselves and their friends and to make sure their pockets are always full. That's my opinion.

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By (user no longer on site) OP   
over a year ago


"The information that is available for research includes medical codes from your records only. It doesn't include anything personal you tell the the gp or even your name and identifying information.

Info they get from the system is all anonymous. Your medical records are all digital anyway and stored on the NHS data base.

If you opt out of sharing your record althogether you put yourself as risk as if you are admitted to hospital the doctors treating you can't see possibly vital information such as allergies etc. I'd be wary about opting out if I was you. "

No I’m only opting out of the data sell off that they have had to postpone because too many people found out about it.

I do not trust this situation at all

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By (user no longer on site)
over a year ago


"The information that is available for research includes medical codes from your records only. It doesn't include anything personal you tell the the gp or even your name and identifying information.

Info they get from the system is all anonymous. Your medical records are all digital anyway and stored on the NHS data base.

If you opt out of sharing your record althogether you put yourself as risk as if you are admitted to hospital the doctors treating you can't see possibly vital information such as allergies etc. I'd be wary about opting out if I was you. "

It will not be anonymised. They intend to pseudonimise it, with enough of an identifier remaining it could be de-anonymised later. If it has a postcode and age attached the procedure is simple(even if currently illegal).

Shouldn’t worry too much about the GDPR. If the govt alter that too much the EU has already stated that data interchange between UK and EU would halt.

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By *igNick1381Man
over a year ago

BRIDGEND


"What are people’s opinions on this, it’s not to do with the virus as such, but yet another thing the government are up to during the recent times. Who will benefit from it and why is it happening?

For those that don’t know The government are auctioning off all our medical data from every interaction you ever had with a doctor and every observation they ever made, your whole medical history, sexual mental health the lot!

Not a lot of people know about it even the people at your surgery may not know

You can opt out but it’s a bit of a process, it’s incredible that it’s happening that the incredible NHS is being used in this way.

My thoughts are that it will be the pharmaceutical company’s who will end up beneficiaries!

That's not an entirely accurate summary, though that's not to say I am happy with this.

The plan (which has been postponed) is for all GPs to copy all of your records centrally to NHS Digital.

The idea being that this is incredibly important and useful data for health studies, which it is.

But it is also incredibly valuable data for insurance, health and other private companies.

This is the issue, where are the guarantees this data will not a) go "missing" b) be leaked c) be sold etc.?

I would like my data to be used to research and answer difficult questions about health. But I do not trust this government, nor the competency of NHS Digital. I have opted out for the time being."

You can't just not trust the government, you dissident you. Shocking.

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