English medical records are about to be given away. As GPs, we’re fighting back • Hacker News Board

Re: English medical records are about to be given away. As GPs, we’re fighting back

#61

Post by dkarp » Sun, Jun 06, 2021, 3:57 PM UTC

walshemj wrote: post #56

dkarp wrote: post #21

As someone who works in HealthTech in the UK, I can see why NHS Digital sees a need for this. We really should be enjoying the benefits of a centralised National Health Service in this country, but the divide and conquer management strategy gives individual GP practices and Hospitals (run by NHS Trusts) a lot of independence. That independence extends to IT systems, meaning you have various patient record systems in…

And its a real pain if you have a complex condition that spans trusts /organizations. I have contact with 3 / 4 trusts and they have difficulty looking at each others records - also blood tests across trusts are non standard.

Which is exactly where a centralised system should excel.

Instead you end up with records being serialised and shot around the place, like https://digital.nhs.uk/services/interoperability-toolkit/dev...

Re: English medical records are about to be given away. As GPs, we’re fighting back

#62

Post by 627467 » Sun, Jun 06, 2021, 4:16 PM UTC

Silhouette wrote: post #16

627467 wrote: post #7

The fact that GPs are acting as some kind of custodians for this data isn't it also the same problem? This data should belong to their owners: the patients.

There are quite a few problems with that in the case of medical records. Some of this information may be urgently needed at a time when the patient is not capable of giving informed consent for its disclosure or does not have it immediately available. Some of the information may be vital to the future healthcare of the patient and would cause serious harm to them if it were lost. And in more of a more morally grey ar…

> medical professionals who are bound by strong professional ethics

"Licensed professionals are infalable and always know better"

Re: English medical records are about to be given away. As GPs, we’re fighting back

#63

Post by Ntrails » Sun, Jun 06, 2021, 4:17 PM UTC

Can someone actually explain what the actual flaw in the proposed anonymisation of the data is?

This sounds a lot like people are in complete dismissal of the potential benefits of a countries worth of aggregated health data to research.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#64

Post by fragileone » Sun, Jun 06, 2021, 4:34 PM UTC

Silhouette wrote: post #44

dkarp wrote: post #40

Earlier quoted context omitted.

You're right, of course, and that is why the situation is how it is. NHS Digital also seem reluctant to become custodians of the data and only administer services that have to be done centrally, such as HSCN and NHSMail, and those services tend to involve a lot of external contractors - so the in-house talent may well be missing. But by siloing the data, we're just trusting doctors and hospitals to know what is best…

I agree that there are serious problems with non-experts administering these systems at local levels as well. There's no good answer right now, IMHO, only less bad ones. But there is a huge difference between the two main policies here in the scale of damage that could be caused by a catastrophic failure. For the same reason, I have limited sympathy for the idea that this is just another internal data transfer and pe…

Especially with the fact that very recently 10% of vaccinated individuals were secretly location tracked to see if it changed their behaviour it would be difficult to put trust in a central authority that they wouldn't abuse this data.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#65

Post by dkarp » Sun, Jun 06, 2021, 4:36 PM UTC

motohagiography wrote: post #46

dkarp wrote: post #40

Earlier quoted context omitted.

You're right, of course, and that is why the situation is how it is. NHS Digital also seem reluctant to become custodians of the data and only administer services that have to be done centrally, such as HSCN and NHSMail, and those services tend to involve a lot of external contractors - so the in-house talent may well be missing. But by siloing the data, we're just trusting doctors and hospitals to know what is best…

Not sure if NHS has this concept, but in other health systems, the NHS equivalent (an economy that operates a health system o.b.o a government) is a set of service providers, with data custodians at the edges. Custodians hold accountability for health information privacy, where service providers are accountable to a custodian. It all rolls up into these entities. Health admins tend to forget that the relationship the…

That's more or less how it ends up working in the NHS, and I guess it's Conway's Law playing out again rather than being intentional.

Health is particularly difficult because it's both data that needs to be accessible by a large number of different people/organisations and also about as sensitive as you can get. Any attempt to make the data more secure necessarily slows access, but making the data more accessible also makes it less secure.

Having seen the quality of some of the systems holding this data on the edges, I would rather see a central database and a lot of funding go into the technology of that system. Why? Because I agree with your other post, that technical controls are the only solution. Controls that could make it impossible for the data to be misused or leaked, or at least make access auditable. That's where the research and funds should be spent.

Ideally, that could be done by every data custodian at the edge, but I just don't think that will happen. It's easier to solve the problem in one place than in 10s or 100s or 1000s of places.

In the UK, there are lots of central data repositories holding pretty sensitive information. I think it's fair to say that the government wouldn't have much problem finding your health data, along with detailed census/tax/internet/phone/travel data, if they decided they wanted to.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#66

Post by Silhouette » Sun, Jun 06, 2021, 4:37 PM UTC

Ntrails wrote: post #63

Can someone actually explain what the actual flaw in the proposed anonymisation of the data is? This sounds a lot like people are in complete dismissal of the potential benefits of a countries worth of aggregated health data to research.

Firstly, to be strictly accurate, the data here will not be anonymous, only pseudonymous.

But in any case, we are talking about a long list of often very specific observations for almost everyone included in the data set. The chances of even supposedly anonymised data with that much detail being subject to reidentification are quite high, and there are plenty of organisations that might be able to infer enough to do it, by comparing against other data sets they already hold.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#67

Post by wolverine876 » Sun, Jun 06, 2021, 4:49 PM UTC

Silhouette wrote: post #16

627467 wrote: post #7

The fact that GPs are acting as some kind of custodians for this data isn't it also the same problem? This data should belong to their owners: the patients.

There are quite a few problems with that in the case of medical records. Some of this information may be urgently needed at a time when the patient is not capable of giving informed consent for its disclosure or does not have it immediately available. Some of the information may be vital to the future healthcare of the patient and would cause serious harm to them if it were lost. And in more of a more morally grey ar…

This creates strawpeople of ideal government and an ideal medical industry, and gives all power and trust to them.

We need to find solutions within the realities of government and industry power and effectiveness.

Also, there is no reason people can't make this decision for themselves. Who are you to tell me what I must do with my personal medical records? I may decide those risks are worthwhile.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#68

Post by wolverine876 » Sun, Jun 06, 2021, 4:54 PM UTC

butterzone wrote: post #26

If you swap out private insurance companies for NHS (due to differences in funding), this is similar to the path the US is on right now. Within the next 1-3 years private insurance companies will know even more about your health than any single provider, and will use this more detailed insight to improve how they model, risk, and determine benefits for you in their favor. The people in charge of the funding fueling h…

How is that happening? Under what program(s) or law(s) or regulation(s)?

Re: English medical records are about to be given away. As GPs, we’re fighting back

#69

Post by wolverine876 » Sun, Jun 06, 2021, 4:56 PM UTC

Silhouette wrote: post #8

abz10 wrote: post #5

I’m guessing the primary use of this data will be for US pharmaceutical companies to find out exactly how much the UK market is worth so they know how much they can pay lobbyists to put pressure on Uk-US trade negotiations.

That seems rather uncharitable. The primary use of the data almost certainly will be what it's claimed to be, helping various legitimate research groups to do their research and helping various legitimate organisations within or supporting the NHS to make sensible plans. The real problem is the inherent risk that other uses will also be made of the data, legally or otherwise. Compliance with the rules for using this…

> The primary use of the data almost certainly will be what it's claimed to be

What is that based on? It's plausible, but so are many things that turn out to be false (and which contradict each other). How do you know?

Re: English medical records are about to be given away. As GPs, we’re fighting back

#70

Post by raspyberr » Sun, Jun 06, 2021, 4:57 PM UTC

The point of this move is to remove a burden from GPs. They'll no longer have to worry about securely handing over data to third parties. Each GP does it in a different way with different levels of skill. This thing will make NHS Digital the first point of contact for third parties to get to the data rather than GPs. The article seems to stress that your data will now be up for sale to corporations but this is already happening to GPs.