UK health secretary Matt Hancock follows delay to GP data grab with campaign called 'Data saves lives'
- Reference: 1624368607
- News link: https://www.theregister.co.uk/2021/06/22/uk_health_secretary_data_saves_lives/
- Source link:
Under the headline [2]"Data saves lives" , the Department for Health and Social Care is publicising a raft of planned initiatives and apparent progress in the face of criticism over its handling of [3]General Practice Data for Planning and Research (GPDPR) programme.
Dubbed the "biggest data grab in NHS history", the programme has [4]bowed to pressure and put back plans to extract GP data on 55 million people in England to be held in a central repository. The GPDPR was due to launch on 1 July but following a backlash from GPs and privacy campaigners was postponed until 1 September.
[5]
Endorsing his new plan, Hancock said data had identified those who were most vulnerable to coronavirus.
[6]
[7]
"Data was essential to our day-to-day response. And it powered vital research that helped us discover new treatments that saved lives in communities across the world. Data made all the difference," he gushed.
"Putting this strategy into action will deliver better treatment for patients, better health results for people who need care and support, and better decision making, research, and support for our colleagues on the front line. It also sets out how we will support the developers and researchers who we've all seen have so much potential to transform health and care."
[8]
But there was no mention of the fact that those researchers might be outside the NHS or UK public sector, or that their main line of work might be market research for private health companies, as [9]The Register showed earlier this year .
[10]British Medical Association calls for clarity on patient deadline for opting out of NHS Digital's GP data grab
[11]Of all the analytics firms in the world, why is Palantir getting its claws into UK health data?
[12]'Vast majority of people' are onside with a data grab they know next to nothing about, reckons UK health secretary
[13]UK government bows to pressure, agrees to delay NHS Digital grabbing the data of England's GP patients
The policy paper describes three main objectives. It wants to "build understanding on how data is used and the potential for data-driven innovation, improving transparency so the public has control over how we are using their data." Then it wants to "make appropriate data sharing the norm and not the exception across health." Lastly it says the government plans to "build the right foundations – technical, legal, regulatory – to make that possible."
There is lots of detail in the paper, some of which is being welcomed by med-informatic professionals. But there is also a sense of caution around Section 7 which describes plans to help "innovators… develop and deliver new solutions quickly and safely for the benefit of all citizens, staff and the system."
Some campaigners in data privacy have slated the proposals. The paper's plan to use secondary legislation to enable "the proportionate sharing of data including, where appropriate, personal information for the purposes of supporting the health and care system without breaching the common law duty of confidentiality" spooked medConfidential.
It asked: "Does this Government really believe it can use 'secondary legislation' to overturn the millennia-long trusted principle of doctor–patient confidentiality that lies at the very heart of healthcare?"
[14]
Phil Booth, coordinator of medConfidential, said: "Boris Johnson's Government says 'Data Saves Lives', but buried in the small print is a rather more dubious deal: 'If you want better care from your data, you must let us sell it'."
Speaking to [15]BBC Radio 4's Today programme this morning, Foxglove director Cori Crider said there were elements of the plan that were positive. But out of the 91 pages only one paragraph mentions GP data, where the bulk of patients' medical history lies.
"Your GP data... is in many ways the plum prize of everything because it's a structured machine-readable set of everyone's health data. It's possibly the most valuable set of health data on the planet. That's potentially of immense value to the NHS... but it also stands to make people a huge amount of money," she said.
Giving medical professionals access to patient data is key to medical research but clearly the UK government has not learned any lessons from the mistakes of care.data - i.e transparency is paramount.
The previous opt out period under GPDPR was six weeks before the 1 July implementation date and the process was said to be too complex. NHS Digital has yet to confirm the new opt out date for the 1 September launch. ®
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[1] https://www.theguardian.com/politics/2021/jun/16/cummings-texts-show-boris-johnson-calling-matt-hancock-totally-hopeless
[2] https://www.gov.uk/government/publications/data-saves-lives-reshaping-health-and-social-care-with-data-draft/data-saves-lives-reshaping-health-and-social-care-with-data-draft#ministerial-foreword
[3] https://www.theregister.com/2021/05/13/nhs_data_grab/
[4] https://www.theregister.com/2021/06/08/uk_gov_delays_gp_data_grab/
[5] 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=2YNIJIFvpv3lbYrYjqrsfNAAAAMc&t=ct%3Dns%26unitnum%3D2%26raptor%3Dcondor%26pos%3Dtop%26test%3D0
[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=44YNIJIFvpv3lbYrYjqrsfNAAAAMc&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=33YNIJIFvpv3lbYrYjqrsfNAAAAMc&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[8] 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=44YNIJIFvpv3lbYrYjqrsfNAAAAMc&t=ct%3Dns%26unitnum%3D4%26raptor%3Dfalcon%26pos%3Dmid%26test%3D0
[9] https://www.theregister.com/2021/05/17/nhs_data_market_access/
[10] https://www.theregister.com/2021/06/16/nhs_digital_gpdpr_deadline/
[11] https://www.theregister.com/2021/06/15/palantir_uk_sci_tech_committee/
[12] https://www.theregister.com/2021/06/09/matt_hancock_nhs_data_grab/
[13] https://www.theregister.com/2021/06/08/uk_gov_delays_gp_data_grab/
[14] 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=33YNIJIFvpv3lbYrYjqrsfNAAAAMc&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[15] https://www.bbc.co.uk/sounds/play/m000x69v
[16] https://whitepapers.theregister.com/
Re: "Data makes money for our Chums"
Not to mention the fact that we already have the data relating to many of the most common preventable causes of illness and a lot of those can be addressed through changes to behaviour rather than new forms of treatment.
And we already have a problem that the most urgent areas of health research are being ignored: there's little investment going into vital areas like new antibiotics because you get a greater financial return from expensive niche treatments.
Sharing health data isn't going to fix either of those more pressing problems - and will likely simply shift the focus further away from them.
Opt-In
If the data sharing is so great, make it opt-in. Problem solved.
Re: Opt-In
don't be silly, they're not STUPID. I mean, those that make opt-in v. opt-out decision. Those on the receiving end, on the other hand...
Past tense
According to Matt Hancock data already did all of these thing. *Past* tense.
Which makes you wonder if this is like "mastering the internet", post-hoc legalization of something they already did.
Just a reminder, the PM caught Covid, they couldn't even keep their leader free from a potentially deadly disease, so all of those claims are bullshit. They failed massively. Data didn't do any of that, but the fact they're claiming it did in PAST TENSE indicates, that from their perspective it was already did.
All they need to do...
Is only allow the data to be accessed by trusted organisations (a named list) and state that it will not be sold / accessible to anyone else without an informed opt-in*.
Unfortunately, that's not going to happen...
* I would be happy to let my data be used for a valid, scoped research program. I will not allow it to be used if I am not given a choice.
Re: All they need to do...
"I will not allow it to be used if I am not given a choice"
If your not given a choice, how do you stop it being used?
Re: All they need to do...
Yep. We are all likely to be happy to supply data to reputable researchers. But I am going to repeat what I said in an earlier discussion...
Because of that ... they won't allow us the option of supporting legitimate, ethical researchers without also allowing their unethical, corrupt mates (the ones who employ ex-Whitehall players as "consultants" or "lobbyists") to rape the data to make money from it and from us ...
That is why I am opting out.
"yet to confirm the new opt out date"
Does that mean the opt-out I've just filled in will not be honoured?
Re: "yet to confirm the new opt out date"
No.
What kind of idealistic hippie would do that?
Re: Does that mean the opt-out I've just filled in will not be honoured?
no, quite the contrary, your opt-out will be reset to default! Unless you un-opt-out, at which point, it will be reset to default.
...
and do you venture a guess as to what default position it is?
Fix the existing problems before making a profit
I am currently being treated for complex health issues in greater Manchester. Attending 3 different hospital's.
Because the computer systems are not joined up I often have to have the same blood and other tests done at each location. Data does save lives and improve overall health outcomes, yet the government makes a data grab and profit from selling our personal data, rather than addressing and fixing the patient records system.
Re: Fix the existing problems before making a profit
That was part of the £14 billion NHS Spine project from the early noughties. However, due to the various parts of our (English, but same was true in Wales and Scotland) not-national health care system bickering over data formats and control, nothing came of it. To fix this problem you either need the wisdom of Solomon or a large stick to bash the various disparate parts of the NHS into submission. I guess you could actually reform the NHS so that it really was national, but the same entrenched positions, not to mention public sentiment against reorganisations, would scupper that too.
Re: Fix the existing problems before making a profit
if only there was some way to ensure that a Health Service could cooperate across an entire Nation? Perhaps some sort of central authority, a National health service if you like.
Of course if you wanted to be able to quietly sell it off eventually it would make sense to split it into different competing regions / hospitals / trusts
> "Data was essential to our day-to-day response.....
...which resulted in our relatively small country having the 6th highest number of deaths in the entire world ???
That's the sort of data we need to protect.
In fact it should probably be classified, national security, need to know, and all that
Wait and see, this is not over yet. Give it a couple of years to shake down and lets look at the figures.
You're saying we've still got a chance to make it to the top?
which resulted in our relatively small country having the 6th highest number of deaths in the entire world
It's the 21st largest out of over 200, not "relatively small", and 19th in terms of deaths per capita.
Rhetorical?
' "Does this Government really believe it can use 'secondary legislation' to overturn the millennia-long trusted principle of doctor–patient confidentiality that lies at the very heart of healthcare?" '
Yes it does.
There's an interesting oxymoron here. Your most confidential data is up for grabs by default via secondary legislation (regulations not fully subject to Parliamentary scrutiny), but the Cabinet Office is operating an [1]information suppression service to avoid "awkward" disclosures under FoI.
So limited scrutiny of data sharing regulations and restricted access to what their effects are on the public.
[1] https://cdn-prod.opendemocracy.net/media/documents/art-of-darkness-opendemocracy.pdf
Data saves lives...
Prove it. In precise, unambiguous terms.
Should be easy enough to do.
Otherwise, it's "data lets us create nonsensical PowerPoint presentations to wow the unaccountable mandarins"
Different ending
"Endorsing his new plan, Hancock said data had identified those who were most vulnerable to coronavirus."
When I got to the word _identified_, my brain had already supplied a different finish: `Endorsing his new plan, Hancock said data had identified those who were opposed to the plan.` Of course they haven't identified me, because I am not in the UK. But it still gives me pause. Hancock can keep banging on about the benefits of the plan. But data is entirely amoral. It can be used for bad purposes as well as good. Since the whole thrust of the plan is to share more, the simple-minded conclusion is that more good things will happen *and* more bad things will happen. To be taken seriously the policy paper must admit the second fact and thus incorporate a cost-benefit analysis. That it doesn't do this tells me all I need to know about the result.
my data
me "please may I have a copy of all data held on me?"
gp "no you can't have ALL data held on you"
me "please may I have information about which data I may or may not have please?"
Still waiting...
Re: my data
You can have all but some personal comments that might be attached to the records. These can only be released with the permission of the individuals concerned.
campaign called 'Data saves lives'
be afraid. Be very afraid.
But then, the average citizen will say: yeah, he's got a point, let's be good citizens, DATA SAVES LIVES. People will swallow this (laden or unladen...)
Note to Editor:
Hi guys.
Quick note.
I didn’t see the opt out links in this article.
They have been really great in the previous articles as I am now (theoretically) out of Type 1 and am processing Type 2 to my GP.
From the man....
least likely to be able to program a microwave
The tories' grasp of technology is inversely proportional to the amount of money their chums can make off it.
Political
Well I guess that title is more acceptable that "Do as you're told pleb".
Although what a wasted opportunity not to use "All your data are belong to us".
The data is only useful when it is accurate
Remove the confidentiality and the data becomes inaccurate which damages public health along with sales to the highest bidders.
Not exactly on point, but...
From the article: "But there was no mention of the fact that those researchers might be outside the NHS or UK public sector, or that their main line of work might be market research for private health companies..."
In a previous related thread (https://forums.theregister.com/forum/all/2021/06/09/matt_hancock_nhs_data_grab/), I detailed my difficulties in dealing with an e-mail from 'Patient Access', which is the method I used to use to order up my repeat prescription. That e-mail said that Patient Access had updated their T&Cs, and it provided a link to allow the updated documentation to be studied.
That link was blocked by UBlock, which I'd only recently installed, because of a filter identified as "||exponea.com^". The same block screen identified the filter as coming from 'cdn.uk.exponea.com'.
Typing 'cdn.uk.exponea.com' into Google resulted in a number of entries for Exponea, but the one that really caught my eye was "Exponea helps you maximize profits and drive customer loyalty by targeting the right customers with the right message at the perfect time".
It's a case of 'nuff said, as far as I'm concerned. I'm OUT!
Don't get me wrong - I fully agree with the concept of gathering all this data together for the purpose of analysis that might lead to new understanding of health issues and possible treatments or cures. I see this as A Good Thing.
But that's the ONLY purpose for collecting the data that I agree with.
"Data saves lives"
Tell that to the Americans who couldn't get insurance for pre-existing health conditions which the insurance companies had data on, you utter utter fool.
I've worked in insurance, you do NOT want them getting this stuff, as they will inevitably start miraculously becoming "AI" companies too very soon.
Politicians talk bollocks
Think that is a far more accurate strapline for this programme.
"Data makes money for our Chums"
would be a more realistic title.