6 ms·

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 Nation

by dkarp 5y ago

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 use around the country and a set of standards and APIs mandated to allow them to communicate. 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. Hospitals and GPs could then get on with treating patients rather than having to employ their staff to figure out the tech side. So why isn't NHS Digital doing that instead? I expect most people actually believe the NHS already have their medical records, and in a sense they do, it just has many different custodians all around the system.

cik 5y ago
This is more or less how it works in Israel. The EMR is owned and controlled by the state. Four private HMOs compete (in the literal sense) to provide services as efficiently and high quality as possible, according to their government licenses. It marries the public sector ability to build giant-ass systems for its citizens, with the private sector's ability to compete. Moving here from Canada I'm beyond shocked how much more efficient, higher quality, and cheaper this system is. I could never go back now. For example: the second I get a prescription it's available in 100% of the pharmacies in the country (that carry my drug). All I have to do is walk in to the one I want, swipe y card, and ya'ala done. I can even check on an app what pharmacies have said drug in stock, and plot a route there.
- chaosite 5y ago
  You're right, but less, rather than more. 1. 4 HMOs total, not hundreds. That's a big difference, it's still pretty centralized. 2. The HMOs actually compete on very little, mostly customer service. They are heavily regulated and have to provide services to a spec that's spelled out by the government, including pricing. 3. These 4 HMOs are mostly historic in origin; starting a new one would probably need to be initiated by the government. 4. For example, your example of (digital) prescriptions being filled by any pharmacy: that's an regulation codified in law. And while 100% of pharmacies can fill it, only those with an arrangement with your HMO will give you the subsidized price.
  - cik 5y ago
    I'd argue that all I really want them to compete on is customer service. All in all this sounds pretty perfect to me. We get quality care, but some element of competition. I've lived under three different types of systems - this seems by far the best.
Silhouette 5y ago
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.
- dkarp 5y ago
  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-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public https://digital.nhs.uk/data-and-information/data-collections...].
pjc50 5y ago
> 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.
deleted 5y ago
[deleted]
walshemj 5y ago
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.
- dkarp 5y ago
  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/developer-resources/transfer-of-care-specification-versions https://digital.nhs.uk/services/interoperability-toolkit/dev...

by dkarp 5y ago

cik 5y ago

This is more or less how it works in Israel. The EMR is owned and controlled by the state. Four private HMOs compete (in the literal sense) to provide services as efficiently and high quality as possible, according to their government licenses. It marries the public sector ability to build giant-ass systems for its citizens, with the private sector's ability to compete. Moving here from Canada I'm beyond shocked how much more efficient, higher quality, and cheaper this system is. I could never go back now. For example: the second I get a prescription it's available in 100% of the pharmacies in the country (that carry my drug). All I have to do is walk in to the one I want, swipe y card, and ya'ala done. I can even check on an app what pharmacies have said drug in stock, and plot a route there.

chaosite 5y ago
You're right, but less, rather than more. 1. 4 HMOs total, not hundreds. That's a big difference, it's still pretty centralized. 2. The HMOs actually compete on very little, mostly customer service. They are heavily regulated and have to provide services to a spec that's spelled out by the government, including pricing. 3. These 4 HMOs are mostly historic in origin; starting a new one would probably need to be initiated by the government. 4. For example, your example of (digital) prescriptions being filled by any pharmacy: that's an regulation codified in law. And while 100% of pharmacies can fill it, only those with an arrangement with your HMO will give you the subsidized price.
- cik 5y ago
  I'd argue that all I really want them to compete on is customer service. All in all this sounds pretty perfect to me. We get quality care, but some element of competition. I've lived under three different types of systems - this seems by far the best.

Silhouette 5y ago

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.

dkarp 5y ago
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-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public https://digital.nhs.uk/data-and-information/data-collections...].

pjc50 5y ago

> 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.

deleted 5y ago

[deleted]

walshemj 5y ago

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.

dkarp 5y ago
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/developer-resources/transfer-of-care-specification-versions https://digital.nhs.uk/services/interoperability-toolkit/dev...