Patient records to be made available to the private sector and other researchers

[Zetetic]

Lying is bit presumptuous most are likely just unaware and sure that might be a failing in training of them and their institution but the attitude of most "data involved" people isn't really helpful to the vast majority of researchers that are spinning several plates and having to learn much more than a load of data procedures.

Bit late, but I think this 100% *not* the case. There are plenty of examples of "Anonymous" being used by people who absolutely should know better. The rise of "de-personalised", particularly by captured "patient voice" groups is weird.

I'm also terribly hacked off by the "D*ta saves li*es" mantra. How fucking patronising. Who's the imagined target that suddenly goes "oh, it 'saves lives'? I didn't know that, I guess I'll shut the fuck up, prince science".

[Sebastian Cobb]

Looks like Dido Harding may well become the head of NHS England. She did such a good job with data security when she was at Talktalk!

[Sebastian Cobb]

Bit late, but I think this 100% *not* the case. There are plenty of examples of "Anonymous" being used by people who absolutely should know better. The rise of "de-personalised", particularly by captured "patient voice" groups is weird.

I'm also terribly hacked off by the "D*ta saves li*es" mantra. How fucking patronising. Who's the imagined target that suddenly goes "oh, it 'saves lives'? I didn't know that, I guess I'll shut the fuck up, prince science".

I do feel like Trenter's assurances come from a bit of a naive project-managery view of the world that fails to acknowledge real-world ambiguity (or change). Things are de-personalised, and there are safeguards, these must be infallible and nothing can go wrong, because we're following some SOP's someone approved once, at some time in the past.

Which doesn't stand up to much scruitny based on the desires of neoliberal politicans to help out corporate mates, their historic lack of respect for privacy or the fact information security is effectively a technical game of cat-and-mouse.

[Zetetic]

Not unrelated to that, the direction of travel is very much about the idea of guaranteeing the correctness of process - and moving away from allowing people opt-outs at all. This certainly what Welsh and Scottish Govs are aiming at to avoid the fiasco that England doesn't seem to be able to get away from.

See some of the stuff being pushed around the "5 safes".

I think part of this is tied up with the excessive emphasis (including by groups like medConfidential) on reidentification and the risk to individuals - rather than on how people with different interests can use data to different ends.

I've been thinking about SIMS a lot and what that all points to. (As it happens it looks like that was founded on basically made-up data, but I'm not sure that actually matters...)

[Zetetic]

I do also wonder if medConfidential etc.'s complete lack of interest in existing GP data extraction by third parties to focus entirely on pushing against English centralised gov collation also reflects essentially neoliberal technocratic leanings that happen to be tied up with dislike of the Westminster Admin and the Tories.

[Buelligan]

I mean, think about this another way, imagine if someone intended to work until healthcare in Britain was privatised.  Is that a big leap? 

Now imagine if all your records, everyone's records, were in private hands too. 

Imagine what that would be like, what the healthcare outcomes would be like, for poor people, people who'd already suffered the loss of parents or siblings through certain inherited diseases, even hadn't lost them but maybe their care had been expensive.  Whatever expensive means when you're talking about the cost of making someone's life viable.

Imagine what would happen to those people. 

Lucky something like that could never possibly happen.

[Pinball]

Privacy is dead. Big Brother owns you.

[TrenterPercenter]

I do feel like Trenter's assurances come from a bit of a naive project-managery view of the world that fails to acknowledge real-world ambiguity (or change). Things are de-personalised, and there are safeguards, these must be infallible and nothing can go wrong, because we're following some SOP's someone approved once, at some time in the past.

I can try and help with this problem.

I'm not assuring you everything will be fine; I'm assuring you that the attitude that everything is as conspiratorial or carried out in bad faith is a malignant one that doesn't account for reality.  I've never said "nothing" can go wrong; far from it; my eyebrows just always raise when to make whatever point someone feels they are making they have to exaggerate things to the point of banality;

Now I'm naive because I don't think anything can ever go wrong; oh look now I'm patronising everyone by calling them stupid and saying "data saves lives".

There is a real problem of collecting the data required for research and ensuring individuals feel they have been consulted and informed - it's not easy and virtually impossible on a population level.  Alongside that is the potential for abuse and there are legal protections that NHS Digital would have had too and will have to uphold.

Made that clear several times.

[Zetetic]

oh look now I'm patronising everyone by calling them stupid and saying "data saves lives".

In fairness, I did not attribute that to you. I perhaps should have made explicit that it's repeated by high-ups within NHS Digital in public articles and frequently deployed by researchers and captured patient voice groups.

There is a real problem of collecting the data required for research and ensuring individuals feel they have been consulted and informed - it's not easy and virtually impossible on a population level.

I actually think this isn't true either, because we have computers now. We could trivially seek mass-feedback from the vast majority of relevant populations for any given research project that's aiming to use that population's records using those records, even taking into account digital poverty.

If we collectively wanted to take these things seriously, it is easier than it has even been to do this. But we won't and it's all your fault, Trenter.

[TrenterPercenter]

In fairness, I did not attribute that to you. I perhaps should have made explicit that it's repeated by high-ups within NHS Digital in public articles and frequently deployed by researchers and captured patient voice groups.

But why do you think this is? You imply that is to patronise you and by extension everyone else but most people do not have a good understanding about why research is important and why yes it actually does save lives; most people don't give a shit; they won't give a shit about their data being used by private companies and they don't give shit about research to try and improve the lives of other people that research can support.

This is an incredibly cynical and one-sided view of the whole thing; most researchers are genuinely trying to make the world a better place; stop people suffering and even take on much of the damage that neoliberal economics creates in communities (mental health being a big one here) but in this telling of the story they are all craven capitalists tricking people out of their data.  It's just not the reality.  Sure that doesn't mean there are not abuses, bad people or malign influences in it as well that you have to work around - just like anything else.

I actually think this isn't true either, because we have computers now. We could trivially seek mass-feedback from the vast majority of relevant populations for any given research project that's aiming to use that population's records using those records, even taking into account digital poverty. If we collectively wanted to take these things seriously, it is easier than it has even been to do this.

Explain this procedure please "trivially seeking mass-feedback" needs unpacking go for it; enlighten me.....

But we won't and it's all your fault, Trenter.

Ermm I'm literally doing a PhD in it (alongside working in the NHS to improve these things on the youth mental heath side of things).

[Sebastian Cobb]

I can't remember the specifics because it was quite tertiary to what we were trying to achieve but at one point we were chatting to some people within the government as they were planning to use a unified form of id for government services (in Scotland) much like NI can be reused to do all sorts of mundane tasks from paying council tax to renewing car tax; and one of the things they were looking at were providing a central dashboard for data sharing, which was something we were considering, it could be used for this sort of thing, although god knows how one would surface the desire to revoke consent, it's obviously possible to revoke access to pools of data easy enough, but if copies have been taken for research, or documentation cites it, that's obviously not going to be an automatic process.

There are of course inherent pitfalls in maintaining a link between the health data and the unified id in the first place.

[The Ombudsman]

Thinking about changing my mind now Trenter says it's OK and after all, he's doing a PhD.

[TrenterPercenter]

Thinking about changing my mind now Trenter says it's OK and after all, he's doing a PhD.

Nope don't fucking try that shite either; nothing was said of the sort. I said I was doing PhD in the area Zetetic was alluding to (and jokingly telling me it was all my fault) and wanted to know his thoughts; maybe I'll steal them.

But seriously trying walk that into some appeal to authority bollocks is trash.  You can't help yourself can you.

[Sebastian Cobb]

It was kind of obvious from the off that your arguments were coming from the position of someone whose interests invlolve getting their grubby mitts all over personal data.

[TrenterPercenter]

I can't remember the specifics because it was quite tertiary to what we were trying to achieve but at one point we were chatting to some people within the government as they were planning to use a unified form of id for government services (in Scotland) much like NI can be reused to do all sorts of mundane tasks from paying council tax to renewing car tax; and one of the things they were looking at were providing a central dashboard for data sharing, which was something we were considering, it could be used for this sort of thing, although god knows how one would surface the desire to revoke consent, it's obviously possible to revoke access to pools of data easy enough, but if copies have been taken for research, or documentation cites it, that's obviously not going to be an automatic process.

There are of course inherent pitfalls in maintaining a link between the health data and the unified id in the first place.

The computing side is never the real problem it is human computer interaction element where issues arise.

[Sebastian Cobb]

Nah, that's kind of not true when it comes to ensuring integrity and anonymity - it's why the general consensus around electronic voting in tech communities outwith the usual companies who stand to make billions for not implementing it properly, is 'just don't'.

[TrenterPercenter]

It was kind of obvious from the off that your arguments were coming from the position of someone whose interests invlolve getting their grubby mitts all over personal data.

As I mentioned before Britain has had enough of experts

But you are right; I spend long nights quaffing down peoples data and shrieking at the moon.  That is all I ever wanted to do; it's all any researcher wants to do.  It really is all about you and stealing your data and nothing else.

[Sebastian Cobb]

As I mentioned before Britain has had enough of experts

But you are right; I spend long nights quaffing down peoples data and shrieking at the moon.  That is all I ever wanted to do; it's all any researcher wants to do.  It really is all about you and stealing your data and nothing else.

Yeah, so you're hardly in an impartial position to argue whether it's safe then, given your livelihood depends upon it:

I'm not convinced governance is thought about in a meaningful way by most people, like lots of 'serious' admin, the general attitude towards it seems to be it's an obstacle one perfunctorily plods through with no real engagement beyond 'will the auditor get upset at this next time they're here?'.

[TrenterPercenter]

Nah, that's kind of not true when it comes to ensuring integrity and anonymity - it's why the general consensus around electronic voting in tech communities outwith the usual companies who stand to make billions for not implementing it properly, is 'just don't'.

No idea what you are talking about as it doesn't seem related to what I was saying; what is "kind of not true?"

Also think it's lovely weather and there are much more fun and better things we could be talking about; so is this a genuine conversation or is this just you with your views on something that you are going to shout at me regardless of whatever I say because for some reason it makes you feel better?  I just think it's all a bit dull and if you want me to just agree with you then I can do that if it really means that much.

[TrenterPercenter]

Yeah, so you're hardly in an impartial position to argue whether it's safe then, given your livelihood depends upon it:

Jesus fucking christ.  I'm out.

This is Brexiteer level drivel.  I work with kids with mental health problems and trying to get services and support into poor areas. I've nothing, absolutely nothing to do with NHS Digital.

[Sebastian Cobb]

No idea what you are talking about as it doesn't seem related to what I was saying; what is "kind of not true?"

It's technically very difficult to handle data in a way that ensures integrity while also not giving away who it belongs to, or at least, being able to do that in a way that doesn't leave markers that can be used to piece that information back together. I'd have thought that quite pertinent. But then apparently your industry has a magic de-personalisation wand.

[Zetetic]

Explain this procedure please "trivially seeking mass-feedback" needs unpacking go for it; enlighten me.....

England has a national NHS app for a start, capable of surfacing GP data.

That gives you a fantastic starting point for sharing planned research focusing on specific populations with those populations. Thinking of doing something on people with GP-coded diagnoses of EUPD? Put something on the app 4 weeks before you start the project where people can respond to your starting position.

[Zetetic]

most people do not have a good understanding about why research is important and why yes it actually does save lives

Well. I think we're at an impasse as to whether this is patronising or not.

[TrenterPercenter]

Well. I think we're at an impasse as to whether this is patronising or not.

Sure you know best.

Anyway as just mentioned I'm out, have fun.

[The Ombudsman]

Nope don't fucking try that shite either; nothing was said of the sort. I said I was doing PhD in the area Zetetic was alluding to (and jokingly telling me it was all my fault) and wanted to know his thoughts; maybe I'll steal them.

But seriously trying walk that into some appeal to authority bollocks is trash.  You can't help yourself can you.

I definitely can help myself thanks. Just find you tiresome.

[Zetetic]

Hearing that a bunch of existing third party data extractions from GP systems in England just ignore the "Type 1" opt-out code. Fantastic. LMAO.

[Zetetic]

Welsh Gov responding to the whole thing by just lying.

[Sebastian Cobb]

Seemingly delayed until September now: https://www.theregister.com/2021/06/08/uk_gov_delays_gp_data_grab/

The big takeaway from that article is that the Information Commissioner, British Medical Association and Royal College of GPs all appeared to have issues with the way it was being rolled out, largely around communication and transparency.

[Zetetic]

Only because of the public attention - they clearly couldn't give a shit about all the non-NHSD collections that 1) no-one knows about and 2) are ignoring Type 1 opt-outs anyway.

[Sebastian Cobb]

Why is the extraction system allowed to see the opt-outs in the first place? Why can't the system the extraction system is consuming withhold them?