UK health secretary Matt Hancock follows delay to GP data grab with campaign called 'Data saves lives' Following UK government's U-turn on the deadline for grabbing GP patient data, under-fire Health Secretary Matt Hancock is launching a policy paper to convince the public of the benefits of sharing their medical data. Under the headline "Data saves lives", the Department for Health and Social Care is publicising a raft of …
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.
there's little investment going into vital areas like new antibiotics
This is a known problem and creative ways have been looked at to try to encourage research in this area. People moan about how much money big pharma make, but it has been extraordinary. Many millions of people now regularly live and extra 15-20 years longer -- that's a massive increase. And that is an amazing testament to the success of big pharma. Money encourages R&D and we all benefit.
But governments need to step up to the plate and offer the cash via various projects. I know this has been mooted, but it is often us, the ignorant public, that think public spending is bad, and only the markets can make things better. And that is often difficult to explain to those that, having now retired, don't want to give any more of their money to their government.
You have to convince this group we must spend more. And that's very difficult when they read the Daily Mail.
regularly live an(d) extra 15-20 years longer
True, but how many of those people are living, albeit with a variety of increasingly severe illnesses, often the result of lifestyle choices decades ago, and propped up by increasingly powerful meds? At this stage I'm not sure if I want to achieve my 4-score years+10 if I'm going to be a pharmacy dumpbin.
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.
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.
Yep. I've done that, thanks to the last time el Reg ran this story.
Fucking NHS. You know it's for old people only. El Reg took me to the opt out page. I had to download a file, print it, sign it and send it off to my GP. FFS, what's wrong with doing it all online?
I've sent it off (but not knowing my NHS number). I don't hold out too much hope they will know what to do with it, and as I don't have any evidence I have sent it they could just ignore it and I'll be none the wiser.
My GP at least still seems to live in the 1950s. Forget the phone, use the Internet.
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.
It's not the organisations, which may for very good reasons need to change, per se that matter, but the purposes for which the data will be used, the conditions under which it will be provided, the form in which it will be shared and the oversight that will be in place.
There really isn't much need for anything other than NHS England, as opposed to agency dreamt up by Hancock which has NHS in its name but is not part of the NHS, to have access to complete data sets. The rest can probably be provided by cohorts.
And the scope can be extended by secondary (i.e. not debated in Parliament) legislation. I don't think so. This is the same thing that scuppered the UK ID card system.
Let's hope the BBC and other news organizations keep flagging the concerns so the public have a chance to understand, not that I think that most of them would bother to take any note.
I was just thinking that as this was the second time I have had to opt out so will this now be a third? What are they trying to do? Get us everyone so fed with opting out we don't bother? or is this just a break so they can get their mates in the media to change public opinion? get some doctor on the news to spout bullshit about how we need this, maybe say without the funds we'll get from this the NHS is doomed. They could have some more of those friendly rigged questions we so often see on question time.
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.
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.
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
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
Which highlights the main problem with the so called debate. Barely anybody realises that actually the entire system was fragmented like this from day one, because the system started off as private entities who billed the customer being allowed to bill "The NHS" for each job that they performed instead, and that beyond being split into counties for administrative convenience the design has barely changed since.
And thus your GP is a private, for profit business that is an external contractor to the NHS and not part of it. Practically every single hospital out there is it's own NHS trust so they can run their own systems the way that they want without being bothered with having to use the same systems as everybody else in the county etc.
Any time anybody suggests doing something sane, like allowing any part of the NHS to having access to your medical records rather than having to beg your GP for them who might provide said records within working hours on promise of an appropriate fee people scream "SaVe teH nhS11!1!!!11".
And the same frigging people then bemoan that we still have a system that on a good day knows who it's patients are because HMRC tells it whom taxpayers eligible for treatment are, but the NHS itself doesn't know basic information it will predictably need if you have an accident and turn up in A&E like say, your blood type or if your going to have an anaphylaxis reaction if they give you various types of medicine, even if your GP knows this.
It's literally insane, yet apparently unchangeable because of how ignorant people are about "The NHS".
I think that saying the hospitals are separate entities is slightly disingenuous. The hospitals are grouped together under regional trusts, which have between 1 and 9 hospitals depending on their size.
I live in Somerset, and the Somerset NHS Trust manages two general hospitals, and then a number of community hospitals that are mainly used to allow recovering patents to be moved from the large hospitals to closer to their homes (this is important in one of the larger UK regions with largely distributed populations), as well as offering some outpatient facilities. I sometimes envy people in cities and large towns who have much better access to hospitals without traveling.
As far as I am aware, this is also a clinical commissioning authority that is the financial controller of procedures.
Various stats. suggest that there are 223 NHS trusts, managing or commissioning work from about 1270 hospitals.
But I agree that these are managed separately, within rules set by the Department of Health and Social Care and other bodies such as MHRA. Over the years I remember the NHS, there has been an ebb and flow between more and less centralisation, and I doubt that will change, although the current shape is probably more amenable to privatization.
Large parts of the support, building and cleaning, as well as equipment procurement for the NHS is already outsourced, so you could say that it is already partly privatized.
As I remember it, the main problem with the original central NHS patient database has little to do with data formats, and much more to do with the way that access to users of the database were tracked and managed. One stat. that I think I remember was that they had identified over 500 job roles requiring different levels of access, and adding the required controls to the data and grading all of the people working in the different trusts with different job titles, roles and responsibilities in each trust was beyond the scope of the project was capable of.
Oh, and the fact that they were wanting to put it into just two very large data centres for the whole country was probably going to cause problems.
I think that saying the hospitals are separate entities is slightly disingenuous. The hospitals are grouped together under regional trusts, which have between 1 and 9 hospitals depending on their size.
Have you worked in NHS IT, and if so do you recollect hospitals using the same systems as everybody else in the county?
The armed forces have a health and care records system that spans the three services - essential really as they work together so often. There seems to be very few problems with interoperability - so it's not impossible to lift the formats into a National standard. The problems ex service personnel have when they transition to civvy street has to be seen to be believed.
The NON-transferability from military systems to civilian not-joined-up data health services has caused extreme problems to ex -service personnel.
It would be better to allow the military system to incorporate the civilian.
The extreme problem of who accesses what is easily solved by making the access via a personal passphrase given by patient to any health service worker needing it.
If it is "MY LIFE" at stake I can if conscious give authority. That works.
If unconscious or unable to communicate then access should be automatic.
I've been healthy, with one or two injuries that have needed treatment in the last couple of decades, but generally have little to no significant data in my medical record.
That was up until a month ago, when it looks I am one of the people who have had an adverse reaction to the Covid vaccine I was given, and ended up as an in-patient in hospital for the first time in nearly forty years, and it looks like this is going have ongoing effects for a while until we know the exact fallout of the event.
Of course I will let people who really need to know this to know, but I really don't want this information being available to others who might deny me services because they've managed to de-anonymize the data, and are not prepared to explain why they don't offer me things.
This is the big danger.
'"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 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.
There is no "millennia-long trusted principle of doctor–patient confidentiality".
Whilst it has been around whilst doctoring has been a proper profession - say a century or so - it can't even be traced back as far as one millennium, to 1021 and the reign of Cnut the Great.
Much before the nineteenth century, doctor–patient confidentiality wasn't an issue, partly because widely disseminating confidential information was almost impossible in a world of widespread illiteracy and manual typesetting.
Instead, you just took your piles along to your barber for treatment, and he stuck leeches on them. And whoever else was waiting to have their hair cut, or their gallstones removed, got to watch. It probably gave them something to talk about whilst they were waiting.
I agree and it shouldn't be difficult to do if they asked researchers that found new ways to diagnose conditions in patients before they became a problem. However the problem with that is you would be proving that NHS researchers are already doing the work they claim they want to farm out to the private sector as people would rightly ask why do that if we can do it ourselves. The it just becomes the money grab that it really is.
"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.
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Therefore they would not write anything on a record that they would not be happy to have the patient see?
You really believe that? An important item in training everyone from doctors, nurses and other medical professionals to medical secretaries is to explain to them that patients get to see EVERYTHING on their records. They have even been used in court.
Lawyer: "What does patient TTFO mean?"
Fast thinking doctor: "Patient To Take Fluids Only"
If you want to explain innocent meanings of comments, snark away!
Alright then: "Won't someone think of the children?" Please, with your personal medical data we can target paedophisles (sic) and other perverts and get them banged up for life. And we'll cure baby cancer. Only terrorists, neerdowells and the Welsh won't agree.
From: https://digital.nhs.uk/services/national-data-opt-out/operational-policy-guidance-document/what-are-national-data-opt-outs
Prior to the launch of the national data opt-out individuals could set two types of general opt-outs, via their GP practice:
a type 1 opt-out prevents information that identifies individuals being shared outside of their GP practice, for secondary uses.
a type 2 opt-out prevented confidential patient information from being shared outside of NHS Digital for purposes beyond individual care.
Type 1 opt-outs continue to be honoured until September 2020 at the earliest when the Department of Health and Social Care (DHSC) will consult with the NDG before confirming their removal.
Type 2 opt-outs have been replaced by the national data opt-out and are no longer valid. All type 2 opt-outs recorded in GP practices up to and including 11 October 2018 have been migrated to become national data opt-outs. NHS Digital has written to inform people who previously registered a type 2 opt-out of this change. More information on the conversion of type 2 opt-outs can be found on the NHS Digital website: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/how-opt-outs-work
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.
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.
Has anyone ever requested their complete medical record? I found that in mine a lot of stuff was incorrect and I even learned that I had a treatment I don't recall ever having.
The fact that they want to do it quick, with opt out rather than opt in, without any control who gets to see what, I think means there is something fishy going on.
I doubt they particularly care about nation's health. It's all about healthy profits of mates.
Were your records complete?
I ask as sometime back, namely, when my daughter was born, I was told that they only retained records for 30 years, which meant that my entire childhood was missing. The impact of this was that they no longer had records that were highly relevant to treating myself and could be relevant to the treatment of my children, given they have inherited (in part) my immune system.
What is thus interesting about the current data grab proposal is that we can expect the new data repositories to not cull data and thus have over time build up a more complete picture of someones medical history than their GP...
I would be interested to know what the NHS expectation is.
I suspect part of the problem I encountered was down to the switch from handwritten records held by a doctors surgery to online records (line drawn to limited data load), combined with switching doctors several times over the years.
- If you go down the Opt-In road you'll miss a big chunk of the population, which will knacker NHS planning, especially for the most disadvantaged / the heaviest service users, which will make inequalities worse. Deciding on OptIn / OptOut is a challenging ethical problem
- Trying to sneak this through in 6 weeks without telling anyone was a fatal error
- The DPIA remains unpublished, so key protections around avoiding re-identification of anonymised or pseudonymised data can't be assessed
- There's continual lying, or confused messages that look like lying, from the powers-that-be, that don't engender trust
- so I'm opting out until we get both a new cabinet, and a better understanding of the protections, I've also created some web pages with guidance on opting out at: https://www.digitalhealthcoachuk.net/gpdproptoutexplained
My other half works in the NHS and assures me that in terms of research and service planning there is already plenty of legitimately obtained, anonymised, clinical data available to the NHS. The feeling is that this is more driven by commercial exploitation potential.
My partner's advice? Opt out to support the NHS: free at the point of delivery to all who need it.
According to Ben Goldacre, who certainly knows more than I do about these things, there is already a way to realise the benefit of the NHS patient dataset, without parcelling it up and handing it over to any old 3rd party. Here (https://www.medrxiv.org/content/10.1101/2021.05.06.21256755v2) is a paper describing how a study of 58 million patients was carried out with the records in situ. If I follow the whole thing correctly, OpenSAFELY (https://www.opensafely.org/) have figured out how to run queries against our data while it is still in the database - so why the need for a data grab in the first place? pxd
Using anonymized patient data for specific epidemiological studies is fine.
However, the government were NOT open and honest about what they were doing, they are passing the data to a 3rd party rather than keeping it within the NHS and allowing access, we don't know what will be done with it, we don't know who will end up having access to it, we don't know what measures have been put in place to keep it private, there's a whiff of selling taxpayers private info for profit about this, and that profit goes where exactly? Not the poor bloody taxpayer that's for sure! You can never put this genie back in the bottle once it's out.
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