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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

63 replies

Weepies · 04/06/2021 00:32

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

OP posts:
JaceLancs · 04/06/2021 20:54

I opted out years ago - with all this recent furore - I went through process again - it confirmed I was already opted out
It’s easy enough to check

Ostara212 · 04/06/2021 20:56

@JaceLancs

I opted out years ago - with all this recent furore - I went through process again - it confirmed I was already opted out It’s easy enough to check
Jace, are you in England and was that the digital bit? The GP bit seems new?
adawong · 04/06/2021 21:08

This must be about the tenth thread about this. Maybe someone from medConfidential is spamming.

Pumperthepumper · 04/06/2021 21:09

@Ostara212

Pumper they're not asking me to go anywhere.

You might want to read the post.

I did:

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

Don’t go (for a smear test) then.

Ostara212 · 04/06/2021 21:11

Pumper nope.

Pumperthepumper · 04/06/2021 21:13

@Ostara212

Pumper nope.
What?
Ostara212 · 04/06/2021 21:16

Pumper that's still not what my post said.

I think I better step away from MN tonight.

Pumperthepumper · 04/06/2021 21:18

@Ostara212

Pumper that's still not what my post said.

I think I better step away from MN tonight.

I quoted your post. That is what it said.
Daphnise · 04/06/2021 21:20

I'm surprised there's any data as GPs never see any patients nowadays, and most hospital appointments/operations are cancelled.

ChequerBoard · 04/06/2021 21:25

@mindutopia

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.

This is spot on.

I will not be opting out because I know how much that data is needed for clinical research purposes and I also know how hard it is to gain access to these anonymised data sets even when it is for genuine research purposes.

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.

Ostara212 · 04/06/2021 21:39

Even the BMA and RCGPs want this to be halted until there's a proper chance to get informed

www.pulsetoday.co.uk/news/technology/bma-calls-for-delay-to-controversial-government-patient-data-programme/

JaceLancs · 04/06/2021 21:43

Yes I am in England
My GP uses patient access app
I got a text message a few days ago this is it
There is some false info about opting out of sharing your data with the NHS. There is no 30 September deadline. You can opt out at any time bit.ly/0pt0ut
I followed the link and it confirmed I was already opted out

RuleWithAWoodenFoot · 04/06/2021 21:45

We've opted out as a family.

Ostara212 · 04/06/2021 21:48

@JaceLancs

Yes I am in England My GP uses patient access app I got a text message a few days ago this is it There is some false info about opting out of sharing your data with the NHS. There is no 30 September deadline. You can opt out at any time bit.ly/0pt0ut I followed the link and it confirmed I was already opted out
Thank you Jace I don't use the app

Re the "you can opt out any time"

I'm sure you can

But you might then be opting out after the data has been sold to whoever.

Have you done the GP form as well? They are separate AFAICS. Belt and braces for me!

bonfireheart · 04/06/2021 21:53

I changed GP years ago and somehow in the changeover all my medical records have been lost. My current GP has been trying for years to no avail. Wonder if this would help me find my own data haha!

Weepies · 04/06/2021 22:03

@mindutopia

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.

I appreciate it's easier to comply when you're in the field and know how these things work. There is bias too - you need the data to keep yourself in a job.

The data shared in the examples you gave are not on par with private medical records. It's a bit more sensitive than our Tesco clubcards.

Can you see why average folk who don't work in the sector are concerned?

More perhaps needs to be done to show this data sharing programme can be trusted. I'm less likely to opt out if given some clear reassurances that my privacy would be protected, backed by laws and regulations. At the moment it feels like a "will you just trust us?" question. And that is a big ask when there is potential for things to go wrong (even if by error or in innocence).

OP posts:
Weepies · 04/06/2021 22:04

@bonfireheart

I changed GP years ago and somehow in the changeover all my medical records have been lost. My current GP has been trying for years to no avail. Wonder if this would help me find my own data haha!
Every cloud...
OP posts:
TimeZonedOut · 04/06/2021 22:07

I will opt out, and do so for my children. The document about it says "We do not allow data to be used solely for commercial purposes" but there will be private companies who come up with some research needs but will use the info for a lot of commercial gain. It might even be a company owned by a govt minister.

The document says NHS digital will not make a profit selling the data, they seem clueless already as they are allowing commercial gain from it. Once again the private sector make money from something that is a national assert.

digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public#we-are-not-going-to-sell-your-data

Paralithic · 04/06/2021 22:08

www.theregister.com/AMP/2021/05/13/nhs_data_grab/

Weepies · 04/06/2021 22:10

[quote Ostara212]Even the BMA and RCGPs want this to be halted until there's a proper chance to get informed

www.pulsetoday.co.uk/news/technology/bma-calls-for-delay-to-controversial-government-patient-data-programme/[/quote]
Thanks for sharing that link. Says a lot coming from the BMA.

"Patients have until 23 June to opt out of the General Practice Data for Planning and Research (GPDPR) programme, but the BMA says it feels this timeline is ‘too short’ and that NHS Digital has not ‘transparently and actively engaged the public in increasing awareness’. / It added that ‘rushing’ the programme out would undermine public confidence."

THIS.

Feels like more needs to be done to earn public confidence because it is important and sensitive data.

OP posts:
WhatNoPeas · 04/06/2021 22:19

This was sent to a WhatsApp group I'm part of in response to someone reading that Guardian article and saying they were opting out. The response below is from someone deep in NHS IT security who actually, unlike the journalists, and people randomly speculating on internet forums, knows what they're on about...

"I'm sorry to say this article is the most perverse misrepresentation of reality. Barely a statement made in it is correct (note that it is an opinion, not a fact piece).

Firstly the data is strongly pseudonymised so no one will be able to see your medical records. They'll be able to see that, for example, 2000 people in Manchester from disadvantaged postcodes have died from lung cancer as opposed to only 1000 in privileged areas. This will allow the NHS to improve commissioning accordingly.

Secondly, the (anonymous) data will absolutely not be blithely given to corporations. There is an incredibly complex vetting procedure before it can be shared with anyone, including academic institutions. Private companies will certainly not be getting hold of the data for anything like corporate profit. For example [someone we know] will be trying to get hold of some of this anonymised data in order to develop a genetic test that will identify people at most risk of getting long Covid and / or most at risk of ending up in hospital with Covid. It will take at least 6 months and 10s of thousands of taxpayers pounds before he can get that data for that purpose alone.

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. That means the Guardian has had 8 years to thoroughly question and investigate rather than release inflammatory articles six weeks before this particularly data transfer event. You can read a part of that public consultation here - www.gov.uk/government/publications/the-information-governance-review

Fourthly, your data won't be shared in six weeks. It will be moved in six weeks. In fact in will be moved from the database of a couple of private organisation with dubious corporate motives and very poor security (I could look at your medical records now if I really wanted too) to a much more secure system with better security and under much fuller public scrutiny. In fact, the specific counter example mentioned in which Google got hold of data occurred precisely because a local, less experienced, hospital was in charge of that data instead of a more transparent public system.

Fifthly, that data is actually moving precisely to the “Trusted Research Environment” that the author suggests we should be using.

The main reason that a few GPs are up in arms are because moving this data represents a egalitarian reset of the control of patient data from private GP practices and private corporations like Emis and TPP to a public controlled environment. The NHS has suffered quite badly from a very slow evolution towards digital patient data sharing. Tens of thousands of patients have undoubtedly died as a result of the failure of the last attempt to improve data sharing. That being said, there is an inevitable trade-off between data confidentiality and patient treatment. So it will and should remain the case that thousands of patients will die in order to ensure better security of data. But the balance has been completely out of whack for years now. The best example of this is that it has been really hard to provide evidence of the disparity of treatment between wealthy and poorer parts of the country and this has led to a continued uninformed approach to commissioning.

I do think that the government could be doing a better job of explaining the situation. Although equally I think it is quite hard when NHS Digital and others are having to balance spending tax payers money on further marketing with spending it on treatment. If you want to read about the most recent data sharing event you can review this - digital.nhs.uk/coronavirus/gpes-data-for-pandemic-planning-and-research/general-practice-transparency-notice. I do feel it would have provided a hint of balance if the Guardian article had provided a link to it and enabled the public to be better informed about the details allowing them to make their own mind up."

Weepies · 04/06/2021 22:22

[quote TimeZonedOut]I will opt out, and do so for my children. The document about it says "We do not allow data to be used solely for commercial purposes" but there will be private companies who come up with some research needs but will use the info for a lot of commercial gain. It might even be a company owned by a govt minister.

The document says NHS digital will not make a profit selling the data, they seem clueless already as they are allowing commercial gain from it. Once again the private sector make money from something that is a national assert.

digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public#we-are-not-going-to-sell-your-data[/quote]
That's fair.

Ben Goldacre's book "Bad Pharma" was an eye-opener: "Big pharma is evil; I would agree with that premise. But because people don’t understand exactly how big pharma is evil, their anger gets diverted away from valid criticisms".

We need a pharmaceutical industry, yes. But we need one that is good, not evil.

“The only thing necessary for the triumph of evil is for good men to do nothing.”― Edmund Burke

Opting out is better than doing nothing.

OP posts:
StiggyZardust · 04/06/2021 22:24

Delivered the opt out forms to the GP today.

Weepies · 04/06/2021 22:26

@WhatNoPeas

This was sent to a WhatsApp group I'm part of in response to someone reading that Guardian article and saying they were opting out. The response below is from someone deep in NHS IT security who actually, unlike the journalists, and people randomly speculating on internet forums, knows what they're on about...

"I'm sorry to say this article is the most perverse misrepresentation of reality. Barely a statement made in it is correct (note that it is an opinion, not a fact piece).

Firstly the data is strongly pseudonymised so no one will be able to see your medical records. They'll be able to see that, for example, 2000 people in Manchester from disadvantaged postcodes have died from lung cancer as opposed to only 1000 in privileged areas. This will allow the NHS to improve commissioning accordingly.

Secondly, the (anonymous) data will absolutely not be blithely given to corporations. There is an incredibly complex vetting procedure before it can be shared with anyone, including academic institutions. Private companies will certainly not be getting hold of the data for anything like corporate profit. For example [someone we know] will be trying to get hold of some of this anonymised data in order to develop a genetic test that will identify people at most risk of getting long Covid and / or most at risk of ending up in hospital with Covid. It will take at least 6 months and 10s of thousands of taxpayers pounds before he can get that data for that purpose alone.

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. That means the Guardian has had 8 years to thoroughly question and investigate rather than release inflammatory articles six weeks before this particularly data transfer event. You can read a part of that public consultation here - www.gov.uk/government/publications/the-information-governance-review

Fourthly, your data won't be shared in six weeks. It will be moved in six weeks. In fact in will be moved from the database of a couple of private organisation with dubious corporate motives and very poor security (I could look at your medical records now if I really wanted too) to a much more secure system with better security and under much fuller public scrutiny. In fact, the specific counter example mentioned in which Google got hold of data occurred precisely because a local, less experienced, hospital was in charge of that data instead of a more transparent public system.

Fifthly, that data is actually moving precisely to the “Trusted Research Environment” that the author suggests we should be using.

The main reason that a few GPs are up in arms are because moving this data represents a egalitarian reset of the control of patient data from private GP practices and private corporations like Emis and TPP to a public controlled environment. The NHS has suffered quite badly from a very slow evolution towards digital patient data sharing. Tens of thousands of patients have undoubtedly died as a result of the failure of the last attempt to improve data sharing. That being said, there is an inevitable trade-off between data confidentiality and patient treatment. So it will and should remain the case that thousands of patients will die in order to ensure better security of data. But the balance has been completely out of whack for years now. The best example of this is that it has been really hard to provide evidence of the disparity of treatment between wealthy and poorer parts of the country and this has led to a continued uninformed approach to commissioning.

I do think that the government could be doing a better job of explaining the situation. Although equally I think it is quite hard when NHS Digital and others are having to balance spending tax payers money on further marketing with spending it on treatment. If you want to read about the most recent data sharing event you can review this - digital.nhs.uk/coronavirus/gpes-data-for-pandemic-planning-and-research/general-practice-transparency-notice. I do feel it would have provided a hint of balance if the Guardian article had provided a link to it and enabled the public to be better informed about the details allowing them to make their own mind up."

Thanks for sharing that. Very informative. Your friend should write an article about this!! We need to know more!
OP posts:
Totallydefeated · 04/06/2021 22:31

So we’ve to trust the NHS and government to keep our data safe, ensure it’s properly anonymised, will not be leaked or left on a train and will not be sold for profit other than for our benefit as a nation/patients. And will not be used against us in any way. And they have fully up to date systems to ensure all this. Hmm

This is the NHS...... what could possibly go wrong? HmmConfused