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

theguardian.com

41–50 of 83 posts

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

#41
post #36

Earlier quoted context omitted.

The state has been planning national healthcare in the UK since shortly after WW2 without needing this before. So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. Evidently the doctors objecting in the linked piece don't bu…

It seems like every movie I found entertaining but a stretch in the 90s is becoming reality: * Demolition Man https://en.wikipedia.org/wiki/Demolition_Man_(film) * Enemy of the State https://en.wikipedia.org/wiki/Enemy_of_the_State_(film) * Gattaca https://en.wikipedia.org/wiki/Gattaca * The Net https://en.wikipedia.org/wiki/The_Net_(1995_film)

I don't see anything in gattaca as having become reality.

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

#42
post #39

Earlier quoted context omitted.

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…

I don't think the NHS actually has the right to keep information from you simply on the "might be harmful" rationale, but I don't think that particular data protection fight has happened yet.

My instinct has always said that transparency should prevail on this kind of issue. However, as it happens, I have previously discussed this exact subject with multiple friends who work in clinical healthcare roles, and I have to acknowledge that they have almost invariably disagreed with my instinct. Given that I'm fairly sure some of them have personally treated people with serious mental health problems, I tend to defer to their expertise on this one.

I don't know what the law actually is (and perhaps none of us do since as you say the issue doesn't seem to have been tested yet) but if the medical experts are almost universally of the same opinion then I probably know what the law should be.

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

#43
post #41
post #36

Earlier quoted context omitted.

It seems like every movie I found entertaining but a stretch in the 90s is becoming reality: * Demolition Man https://en.wikipedia.org/wiki/Demolition_Man_(film) * Enemy of the State https://en.wikipedia.org/wiki/Enemy_of_the_State_(film) * Gattaca https://en.wikipedia.org/wiki/Gattaca * The Net https://en.wikipedia.org/wiki/The_Net_(1995_film)

I don't see anything in gattaca as having become reality.

https://en.wikipedia.org/wiki/Preimplantation_genetic_diagno...

https://www.nature.com/articles/d41586-019-00673-1

23andMe/AncestryDNA

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

#44
post #40

Earlier quoted context omitted.

I would personally prefer those patient records to be on software provided and administered by a technical organisation with the expertise to understand the security risks involved and working full time on that problem. So would I, but it is not clear that any such software or technical organisation exist yet. NHS Digital might be trying to move in that direction with things like the TRE for working with COVID data,…

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 people are getting worked up without cause. The NHS isn't really a single organisation, the people pushing for this aren't really clinical staff, and there has been a long and undignified history of screw-ups when it comes to patient confidentiality and larger data sharing schemes. Caution does seem to be in order here.

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

#45
My issue with it is central data repositories create a kind of secret surveillance para-bureaucracy with no individual accountability.

What is frustrating is efforts like this are trying to squeeze the toothpaste out of the tube, and I suspect before current techs we have today like differntial privacy and tokenization make anonymous sharing and analysis viable. Medical researchers are people like anyone, they aren't some kind of preisthood, and they are going to leak and share the data and use it for political purposes as their opportunities and incentives change.

The technical controls researchers actively resist are basic corporate controls as simple as identifying everyone who logs in to view the datasets with their real names, background checks on people with admin credentials on personal health databases, probabilistic watermarking and dating cuts of datasets shared with researchers so that any leaks can be traced back to a specific accountable people to contain it, and requiring a public record and accounting of the research and projects they were using the data for, using synthesized data in technical test environments and not real health information. These are basic corporate controls that aren't part of the research culture. Some places may have them, but I wouldn't be surprised if the organizations conspire to neglect their processes.

The benefits they say are for using ML for research and it will cure all manner of diseases and detect others early. This sounds great, but what is missing are legal consequences for exploiting people via their data. People aren't managed livestock, so the prestige of a few researchers needs to be balanced with the quality of the society these new data powers create. If your worst political enemy is an exception to the principle of the confidentiality of this data, then you aren't suited to access it, and to be allowed to do so compromises the whole system for everyone.

A test people could use for privacy is whether you would be ok with the activist groups operating in universities, communist party of china, and their federal police force having secret legal access to health records, and if they aren't, what rules do we need to compensate?

Inadmissability of data in any of these data sets in legal proceedings seems like one useful control. Personal penalties for abuse and leaking of this data would be another. Licensing and professional regulation of individuals who administer systems that process personal information that has been obtained without explicit consent of individual data subjects seems complex, but I could see some version of it happening in the next 20 years.

Without these additional controls, it's just a data grab, and these GP's are right and in fact brave to resist it.

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

#46
post #40

Earlier quoted context omitted.

I would personally prefer those patient records to be on software provided and administered by a technical organisation with the expertise to understand the security risks involved and working full time on that problem. So would I, but it is not clear that any such software or technical organisation exist yet. NHS Digital might be trying to move in that direction with things like the TRE for working with COVID data,…

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 they are scaling is between physicians and patients, and it is not the government managing the vetrinary system for a person farm. This health system as proxy for public policy issue is dangerous.

If you see my previous comment on this thread about objections to data collection, an opposing view of another health tech and policy expert would be really valuable to the discussion.

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

#47
post #9

Is this possible because of Brexit or is it just more unlawful data collection in the UK? If I (in Denmark) switch GP my new GP can't see my journals without me filling out a form to allow it and hospitals definitely can't access them no matter what as it is two independent systems.

In England when you move GP records are sent to the new GP without any action from the patient (although in practice this doesn’t always work). If you move to another part of the UK this doesn’t work because the devolved nations manage their own health systems.

The data transfer isn't necessarily straightforward though, and in the worst case can take months: https://www.carersuk.org/forum/support-and-advice/all-about-...

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

#48
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…

The keeping information private one is interesting, and more complex than it looks. I know of a case of someone who was having problems with NHS, requested her records, found some very nasty comments, complained, had her care switched to another team, and did so much better.

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

#49
post #43
post #41

Earlier quoted context omitted.

I don't see anything in gattaca as having become reality.

https://en.wikipedia.org/wiki/Preimplantation_genetic_diagno... https://www.nature.com/articles/d41586-019-00673-1 23andMe/AncestryDNA

the first link predates the movie and isn't really the same thing. IIRC they don't edit babies in the movie.

(you're arguing with a biologist who worked in this field, I'm making the point that the movie has not fundamentally come true, even if there are some details are the edges that resemble it).

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

#50

Earlier quoted context omitted.

> This is literally going against the underlying principles of the NHS. Bizarre claim. The underlying principle of the NHS is socialised healthcare. Opting out of contributing to allow the NHS to plan for everyone's healthcare is the opposite of being social. > There is no 'transaction' going on here. I already contribute to the NHS through my taxes. Seems self-contradictory?

Not really. The NHS is a function of life, as much as a publicly owned road or school. I don't owe it anything.

> This is literally going against the underlying principles of the NHS

yet

> I don't owe it anything

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