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

theguardian.com

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

#31

Post by throwaway3699 »

chrisseaton wrote: post #18
throwaway3699 wrote: post #17

Earlier quoted context omitted.

> If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute. This is literally going against the underlying principles of the NHS. There is no 'transaction' going on here. I already contribute to the NHS through my taxes.

> 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.

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

#32

Post by FridayoLeary »

My perception of the NHS is that it is currently swamped in paperwork. I'm not sure why we are paying highly qualified doctors to spend huge amounts of time filling in endless documents in triplicate. Does anyone know if this digitization will have any effect.

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

#33

Post by psychlops »

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…

Let's not forget that there are quite a few problems with other people and organizations taking default ownership of patients data.

No system will be perfect and because there are a marginal cases where it fails shouldn't therefore push responsibility to "professionals".

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

#34

Post by Silhouette »

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…

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, and that is commendable. However, it was not long ago that another proposed response to COVID was installing an unnecessarily privacy-invasive app on everyone's phones, so evidently we are still a long way from the non-clinical people with power and influence over these huge systems also understanding and respecting their implications.

The only sure way we know to prevent inappropriate disclosure and use of sensitive personal data is not to hold that data in the first place. Obviously that is impractical with medical records, so for now, the next safest thing remains to have the data held by and accessible to as few people as possible instead of creating one huge target and a single point of failure. That might be unfortunate for those with a legitimate interest in working with larger data sets for good reasons, and it might slow down or even prevent beneficial advances in medical knowledge, and I expect we'd all agree that these are not desirable outcomes. We have to balance those losses against the enormous risk to the whole population if confidentiality and ultimately trust between doctor and patient is compromised, because that could be what is at stake here.

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

#35

Post by atc »

ML has so much potential to help us in healthcare.

We don't need this Guardian low-level analysis scuppering progress in this area because they drop the dirty word of "private" or "profit".

Yes, it needs careful regulation and management on all sides, and a mechanism where patients own their data, but I welcome datasharing in healthcare.

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

#36

Post by nanis »

Silhouette wrote: post #20
chrisseaton wrote: post #15

Earlier quoted context omitted.

> So please, take a default that protects people first. Their argument is that having high-quality data to plan healthcare is protecting people. If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute.

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)

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

#37

Post by Silhouette »

FridayoLeary wrote: post #32

My perception of the NHS is that it is currently swamped in paperwork. I'm not sure why we are paying highly qualified doctors to spend huge amounts of time filling in endless documents in triplicate. Does anyone know if this digitization will have any effect.

If you want to look at the bigger picture, possibly the most fundamental problem we have in England is that there aren't enough doctors. Despite the capacity problems and delays at GP surgeries that most of us have experienced at some point, there has been a downward trend in the full-time-equivalent GPs per capita in England over the past decade or so.

https://fullfact.org/health/gp-numbers-or-down/

It's also likely that the decreasing availability of GP appointments is causing an increase in people turning up at major A&E centres instead, where it may cost far more to treat them for a non-urgent condition that a GP could have dealt with instead if one had been available within a reasonable period.

Just to add to the pressure, we also have a population that is living longer, so GPs may increasingly be helping the elderly to manage multiple conditions as well.

Reducing non-clinical overheads for doctors that take time away from patient care is certainly important, but the bottom line is that our society needs more doctors or the quality of healthcare will continue to decline.

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

#38

Post by pjc50 »

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…

> divide and conquer management strategy

Yeah, this is a pre-privatisation setup; rather than run the whole thing as a national enterprise, have a set of separate "playing at shops" organisations engaged in a pseudo-market of buying services from each other.

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

#39

Post by pjc50 »

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…

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.

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

#40

Post by dkarp »

Silhouette wrote: post #34
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…

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 and that can't be a good idea either. The WannaCry attack a few years ago was good evidence of that.

On a side note, I can't imagine how hard it must be for the NHS to do anything when essentially an internal transfer of data within the organisation is labeled as "Your medical records are about to be given away" by the media. They seem almost to be victims of how open they are about these data transfers and I sense an exasperation between the lines when reading their response [https://digital.nhs.uk/data-and-information/data-collections...].

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