'Vast majority of people' are onside with a data grab they know next to nothing about, reckons UK health secretary
(2021/06/09)
- Reference: 1623230113
- News link: https://www.theregister.co.uk/2021/06/09/matt_hancock_nhs_data_grab/
- Source link:
Comment Against a strong field, UK Health Secretary Matt Hancock has come out as a winner in the prize for stomach-churning political double-speak while addressing NHS Digital's [1]shameless grab for patient data held by GP surgeries in England.
As we reported [2]yesterday , that grab has since been delayed by two months, supposedly to 1 September, though the date of the final day for opt-outs has not been given.
Yet it seems a day earlier on Monday, Hancock was unaware of the pending change in the GP data haul start date. While speaking in Parliament about the vital role evidence from patient data can play in medical research — a point few contend — Hancock made the bold claim that "the vast majority of people are strongly onside" with the [3]General Practice Data for Planning and Research (GPDPR), taking the time to cite no evidence whatsoever.
[4]
The plan to scoop up around 55 million people's medical records in England and share it with [5]academia and private-sector companies with scant regard for data protection law is, apparently, a hit with the public, Hancock told MPs.
[6]
[7]
The claim was in response to a question from Jonathan Ashworth, Shadow Secretary of State for Health and Social Care. He said information patients may have shared — while in a vulnerable state — with GPs years ago, about the termination of pregnancy, domestic or sexual abuse, substance misuse or alcohol abuse, are set to be shared with NHS Digital and "potentially used by commercial interests, and yet hardly anyone knows about it."
[8]UK's Labour Party calls for delay to NHS Digital's GP data slurp until patients can be properly informed
[9]BMA and Royal College of GPs refuse to endorse NHS Digital's data grab from surgeries in England
[10]Conflicting messaging overshadows NHS Digital's attempts to inform public about patient data slurp
[11]'Biggest data grab' in NHS history stuffs GP records in a central store for 'research' – and the time to opt out is now
[12]Dominic Cummings: Health secretary's 'stupid' targets delayed building UK test and trace system to combat COVID
Ashworth asked why the project could not be "paused" until a "transparent consultation" could be launched with "patients and clinicians about how best confidential data can be shared for research purposes."
But Hancock was unmoved.
He said research based on data within the NHS is life-saving, and had been used "incredibly powerfully" during the pandemic.
Opting out of NHS Digital data grab
The 55 million citizens of England will need to opt out of the involuntary General Practice Data for Planning and Research scheme before it is introduced to prevent the entire history of their GP visits being slurped, according to campaigners. The official announcement is [13]here . Opt-out forms are [14]here [.docx]. We understand you will need to give this form to your GP practice or data held by your GP joins the central repository, starting 1 September.
There is also a secondary opt-out process that stops non-GP data, such as hospital or clinic treatments, being used or sold for purposes other than your direct care. Healthcare data privacy campaigner medConfidential explains both Type 1 and Type 2 opt-outs [15]here .
"The UK is the place where we discovered some of the life-saving treatments for COVID, like dexamethasone, because of the powerful use of data. In fact, just that discovery of dexamethasone using NHS data has saved over a million lives around the world," the Health Secretary said.
Hancock went on to say that data "doesn't belong to any GP, it belongs rightly to the citizen, it belongs to the patient, that's the approach that we should take."
[16]
How this statement translates into an approach whereby NHS Digital — a non-departmental body commissioned by NHS England, another non-departmental body of the Department of Health and Social Care i.e. the government — [17]should take the data by default as [18]instructed by Hancock himself is anyone's guess.
Meanwhile, it is difficult to see how this cherished sense of data belonging to the patient is supported by the fact that patients were [19]given only six weeks to opt out , with only a few posts on NHS Digital's website and associated tweets by way of notification.
Nonetheless, Hancock assured MPs patient data accrued in the data grab would "improve lives and save lives."
[20]
He told MPs: "That's the approach that we're going to take in building a modern data platform for the NHS, so that we can use this modern asset to improve individuals' care and to improve research and therefore all of our care, whilst of course preserving the highest standards of safety and privacy."
Asked again if he would delay the rollout to allow for better, more inclusive communication by Munira Wilson, Lib Dem spokesperson for Health, Wellbeing and Social Care, Hancock claimed "the large majority of the NHS are now actively enthusiastic about using data better" without offering any evidence and again refusing to budge.
The Health Secretary's defence of the GPDPR plan amounts to saying if you're against it, you're against using health data for medical research, which no one has said. On the question of why now, and why in this way, he remains silent. ®
Get our [21]Tech Resources
[1] https://www.theregister.com/2021/05/13/nhs_data_grab/
[2] https://www.theregister.com/2021/06/08/uk_gov_delays_GP_data_grab
[3] https://www.theregister.com/2021/05/13/nhs_data_grab/
[4] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=2&c=2YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D2%26raptor%3Dcondor%26pos%3Dtop%26test%3D0
[5] https://www.theregister.com/2021/05/17/nhs_data_market_access/
[6] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=4&c=44YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D4%26raptor%3Dfalcon%26pos%3Dmid%26test%3D0
[7] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=3&c=33YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[8] https://www.theregister.com/2021/06/07/gpdpr_labour/
[9] https://www.theregister.com/2021/06/04/bma_and_royal_college_of/
[10] https://www.theregister.com/2021/05/24/nhs_digital_gp_data_store/
[11] https://www.theregister.com/2021/05/13/nhs_data_grab/
[12] https://www.theregister.com/2021/05/27/health_secretarys_targets_delayed_the/
[13] https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research
[14] 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
[15] https://medconfidential.org/how-to-opt-out/
[16] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=4&c=44YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D4%26raptor%3Dfalcon%26pos%3Dmid%26test%3D0
[17] https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice#our-legal-basis-for-collecting-analysing-and-sharing-patient-data
[18] https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/directions-and-data-provision-notices/secretary-of-state-directions/general-practice-data-for-planning-and-research-directions-2021
[19] https://www.theregister.com/2021/06/07/gpdpr_labour/
[20] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=3&c=33YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[21] https://whitepapers.theregister.com/
As we reported [2]yesterday , that grab has since been delayed by two months, supposedly to 1 September, though the date of the final day for opt-outs has not been given.
Yet it seems a day earlier on Monday, Hancock was unaware of the pending change in the GP data haul start date. While speaking in Parliament about the vital role evidence from patient data can play in medical research — a point few contend — Hancock made the bold claim that "the vast majority of people are strongly onside" with the [3]General Practice Data for Planning and Research (GPDPR), taking the time to cite no evidence whatsoever.
[4]
The plan to scoop up around 55 million people's medical records in England and share it with [5]academia and private-sector companies with scant regard for data protection law is, apparently, a hit with the public, Hancock told MPs.
[6]
[7]
The claim was in response to a question from Jonathan Ashworth, Shadow Secretary of State for Health and Social Care. He said information patients may have shared — while in a vulnerable state — with GPs years ago, about the termination of pregnancy, domestic or sexual abuse, substance misuse or alcohol abuse, are set to be shared with NHS Digital and "potentially used by commercial interests, and yet hardly anyone knows about it."
[8]UK's Labour Party calls for delay to NHS Digital's GP data slurp until patients can be properly informed
[9]BMA and Royal College of GPs refuse to endorse NHS Digital's data grab from surgeries in England
[10]Conflicting messaging overshadows NHS Digital's attempts to inform public about patient data slurp
[11]'Biggest data grab' in NHS history stuffs GP records in a central store for 'research' – and the time to opt out is now
[12]Dominic Cummings: Health secretary's 'stupid' targets delayed building UK test and trace system to combat COVID
Ashworth asked why the project could not be "paused" until a "transparent consultation" could be launched with "patients and clinicians about how best confidential data can be shared for research purposes."
But Hancock was unmoved.
He said research based on data within the NHS is life-saving, and had been used "incredibly powerfully" during the pandemic.
Opting out of NHS Digital data grab
The 55 million citizens of England will need to opt out of the involuntary General Practice Data for Planning and Research scheme before it is introduced to prevent the entire history of their GP visits being slurped, according to campaigners. The official announcement is [13]here . Opt-out forms are [14]here [.docx]. We understand you will need to give this form to your GP practice or data held by your GP joins the central repository, starting 1 September.
There is also a secondary opt-out process that stops non-GP data, such as hospital or clinic treatments, being used or sold for purposes other than your direct care. Healthcare data privacy campaigner medConfidential explains both Type 1 and Type 2 opt-outs [15]here .
"The UK is the place where we discovered some of the life-saving treatments for COVID, like dexamethasone, because of the powerful use of data. In fact, just that discovery of dexamethasone using NHS data has saved over a million lives around the world," the Health Secretary said.
Hancock went on to say that data "doesn't belong to any GP, it belongs rightly to the citizen, it belongs to the patient, that's the approach that we should take."
[16]
How this statement translates into an approach whereby NHS Digital — a non-departmental body commissioned by NHS England, another non-departmental body of the Department of Health and Social Care i.e. the government — [17]should take the data by default as [18]instructed by Hancock himself is anyone's guess.
Meanwhile, it is difficult to see how this cherished sense of data belonging to the patient is supported by the fact that patients were [19]given only six weeks to opt out , with only a few posts on NHS Digital's website and associated tweets by way of notification.
Nonetheless, Hancock assured MPs patient data accrued in the data grab would "improve lives and save lives."
[20]
He told MPs: "That's the approach that we're going to take in building a modern data platform for the NHS, so that we can use this modern asset to improve individuals' care and to improve research and therefore all of our care, whilst of course preserving the highest standards of safety and privacy."
Asked again if he would delay the rollout to allow for better, more inclusive communication by Munira Wilson, Lib Dem spokesperson for Health, Wellbeing and Social Care, Hancock claimed "the large majority of the NHS are now actively enthusiastic about using data better" without offering any evidence and again refusing to budge.
The Health Secretary's defence of the GPDPR plan amounts to saying if you're against it, you're against using health data for medical research, which no one has said. On the question of why now, and why in this way, he remains silent. ®
Get our [21]Tech Resources
[1] https://www.theregister.com/2021/05/13/nhs_data_grab/
[2] https://www.theregister.com/2021/06/08/uk_gov_delays_GP_data_grab
[3] https://www.theregister.com/2021/05/13/nhs_data_grab/
[4] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=2&c=2YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D2%26raptor%3Dcondor%26pos%3Dtop%26test%3D0
[5] https://www.theregister.com/2021/05/17/nhs_data_market_access/
[6] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=4&c=44YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D4%26raptor%3Dfalcon%26pos%3Dmid%26test%3D0
[7] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=3&c=33YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[8] https://www.theregister.com/2021/06/07/gpdpr_labour/
[9] https://www.theregister.com/2021/06/04/bma_and_royal_college_of/
[10] https://www.theregister.com/2021/05/24/nhs_digital_gp_data_store/
[11] https://www.theregister.com/2021/05/13/nhs_data_grab/
[12] https://www.theregister.com/2021/05/27/health_secretarys_targets_delayed_the/
[13] https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research
[14] 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
[15] https://medconfidential.org/how-to-opt-out/
[16] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=4&c=44YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D4%26raptor%3Dfalcon%26pos%3Dmid%26test%3D0
[17] https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice#our-legal-basis-for-collecting-analysing-and-sharing-patient-data
[18] https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/directions-and-data-provision-notices/secretary-of-state-directions/general-practice-data-for-planning-and-research-directions-2021
[19] https://www.theregister.com/2021/06/07/gpdpr_labour/
[20] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=3&c=33YMCRQYJil17InO4Qh4K45QAAANE&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[21] https://whitepapers.theregister.com/
Not sure why the comment section is open to be honest
Dan 55
Given the British government has taken the US' pioneering "alternative facts" and made it their own while the US has thankfully corrected its mistake, there's no debate to even be had, since everything said by Hancock was the diametric opposite to reality.
Anonymous Coward
I know this is minor in the grand scheme of things, but was the acronym deliberately picked to look like "GDPR"?
"GPDPR" seems to have the exact opposite goals to the above acronym.
Theoretically...
Headley_Grange
It's obvious to me that collating, organizing, analysing, mining, AI-ing all the NHS patient data is a good thing for health research, society an, potentially, me. I'm all for it.
It's similarly obvious to me that insurance companies, social media sites, news sites and criminals getting access to the same data is a bad thing.
If someone gave me a rock solid guarantee - air gapped data with crown jewel security and with the regs written in criminal law backed up by jail terms for politicians past and present in the case of breaches and real £££money compensation for citizens then I might, just might, consider giving them access*
Until then, they can all fuck off.
*I still probably wouldn't.
it belongs rightly to the citizen, that's the approach that we should take.
Howard Sway
But that's not the approach you have taken is it?
The approach that has been taken is "let's grab it quickly with as little publicity as possible, make it hard to opt out of, and sell everybody's data off once and for all as a fait accompli, whilst telling the idiot voters it's all in their own interests using a bit of sentimental soft soap about 'saving lives'".
The shitty way they've tried to do it on the quiet just shows how embarrassed they must be about what the true intent of this data grab is.
Velv
Not that I trust Cummings, but his assessment of Hancock seems not only reasonable, but probably understated.
"Think of the Children"
How many five year olds are writing opt out letters to their GP?
*
And how many of today's five year olds are going to find out in, say, ten years time that the "pseudonomised" data slurped in 2021 has actually been assigned to them........and is completely wrong?
*
Do the names Palantir or Acxiom ring any bells?