NHS records being centralised by 1st July 2021

[ik9000]

I'm not sure the latest version of Excel runs on Windows XP..

I laugh but sadly it's probably true they're still on it

[spacein_vader]

I laugh but sadly it's probably true they're still on it

Nope, we're even almost completely off Win7!

NHS Digital: Yesterdays technology tomorrow!

[CAT-THE-FIFTH]

nope, we're even almost completely off win7!

Nhs digital: Yesterdays security tomorrow!

ftfy!

[OwP]

Large historic IT systems will always rely on old technology, the German health systems is a massive user of fax machines, and the most common interface for QC systems in semi conductor fabs are 4-20 mA and RS232. There are still dot matrix printers in production. If the NHS is anywhere near getting rid of Win7 they are well ahead of the majority of manufacturing and R&D facilities worldwide. I test kit that was designed in the 1970s -new, in some cases there is still nothing that beats some of the old kit, and its still being installed in new brand new plant.

[Scryder]

How do I opt-out of this? I thought with GDPR rules, they're meant to ask you FIRST before doing something like this... I certainly didn't get any letters/text from my GP that this was happening. Knowing how my GP seem to miss tons of letters from other services involved in my family's care, because the receptionists and secretaries didn't upload, I'm not surprised I didn't get any notification. Not sure I'm comfortable having all data on a central database, knowing what I've seen of the NHS' IT infrastructure, it doesn't inspire me with much confidence. Plus the fact that this falls in very personal info... not sure this is a good move. Imagine your potential employer looking up your private medical data on some leaked database because it got hacked... Things that are meant to remain confidential, and NOT for some HR person to look it up. Maybe I'm just overcautious... but...

I didn't read the whole article btw, just the headline, TL;DR. So apologies if I missed any nuances.

[spacein_vader]

How do I opt-out of this? I thought with GDPR rules, they're meant to ask you FIRST before doing something like this... I certainly didn't get any letters/text from my GP that this was happening. Knowing how my GP seem to miss tons of letters from other services involved in my family's care, because the receptionists and secretaries didn't upload, I'm not surprised I didn't get any notification. Not sure I'm comfortable having all data on a central database, knowing what I've seen of the NHS' IT infrastructure, it doesn't inspire me with much confidence. Plus the fact that this falls in very personal info... not sure this is a good move. Imagine your potential employer looking up your private medical data on some leaked database because it got hacked... Things that are meant to remain confidential, and NOT for some HR person to look it up. Maybe I'm just overcautious... but...

I didn't read the whole article btw, just the headline, TL;DR. So apologies if I missed any nuances.

If you're concerned enough about what's happening then you should be concerned enough to read the whole article, and possibly others too on the subject. How they can use an opt-out has also been discussed further up the thread.

I still believe one single record for the whole NHS is of benefit to both it and its patients. Your example about GPS letters is a good example of why.

I'm far less convinced (to put it mildly,) of the need or benefits of opening it up externally.

[ik9000]

If you're concerned enough about what's happening then you should be concerned enough to read the whole article, and possibly others too on the subject. How they can use an opt-out has also been discussed further up the thread.

I still believe one single record for the whole NHS is of benefit to both it and its patients. Your example about GPS letters is a good example of why.

I'm far less convinced (to put it mildly,) of the need or benefits of opening it up externally.

There might be an argument to know someone's allergies and any salient data that might affect emergency treatment, or their suitability to give blood / precautions a treating doctor might need to know about (HIV etc) but that is about it - and it should only be accessible to those who need it at the time, and under no other circumstances. What they are proposing is far beyond that and I am against it. But but spotting trends and blah blah... Data records are not being anonymised, people are saying it will be possible to link it back to individuals. That is invasive and inappropriate.

There are some things, many things even, that go on GP records that frankly, someone in say, A&E, or the vaccine clinic, etc does not need access to. It is not right that someone in "the NHS" (and the NHS is a very big umbrella, including data assessment, public health planning, and all sorts of wider roles) needs full searchable access to everything that goes in someone's personal, confidential, doctor's notes. I know people "in the NHS" whose sole role is drug trials. They don't need unfettered access to GP records. Nor do the blood blank. The NHS dentist (if you're lucky enough to still have one) doesn't need to know whether Jane visited the STI clinic, or whether Mrs Miggins saw the doctor two months ago with anxiety and depression following her husband's death. The public health planning authority has no business in needing to know what Johnny saw the doctor about aged 11, 18 or 23 when Johnny is aged 65 and no longer lives in the place he grew up, etc.

[spacein_vader]

There might be an argument to know someone's allergies and any salient data that might affect emergency treatment, or their suitability to give blood / precautions a treating doctor might need to know about (HIV etc) but that is about it - and it should only be accessible to those who need it at the time, and under no other circumstances. What they are proposing is far beyond that and I am against it. But but spotting trends and blah blah... Data records are not being anonymised, people are saying it will be possible to link it back to individuals. That is invasive and inappropriate.

There are some things, many things even, that go on GP records that frankly, someone in say, A&E, or the vaccine clinic, etc does not need access to. It is not right that someone in "the NHS" (and the NHS is a very big umbrella, including data assessment, public health planning, and all sorts of wider roles) needs full searchable access to everything that goes in someone's personal, confidential, doctor's notes. I know people "in the NHS" whose sole role is drug trials. They don't need unfettered access to GP records. Nor do the blood blank. The NHS dentist (if you're lucky enough to still have one) doesn't need to know whether Jane visited the STI clinic, or whether Mrs Miggins saw the doctor two months ago with anxiety and depression following her husband's death. The public health planning authority has no business in needing to know what Johnny saw the doctor about aged 11, 18 or 23 when Johnny is aged 65 and no longer lives in the place he grew up, etc.

There are access controls. The receptionist at your GP will see your basic contact details, NHs number etc and possibly allergy information, most clinicians won't have access to sensitive info such as sexual health, dentistry will only see dentist records and so on. Even your GP won't see absolutely everything by default.

There's "break glass" functionality for A&E and emergency situations. They won't see everything but if you collapse they can access the full record. A pop up will ask "are you sure? Accessing this record will trigger an alert and you'll be asked to justify your access.". Obviously if someone has collapsed in the ED waiting area that's fine, I'd you're just curious if they've got the clap not so much.

Just because all the info is in one place doesn't mean everyone in the NHS can see all of it. But it should stop things like the GP knowing you have a latex allergy but the hospital only find out when you start swelling up.

Health planning will be done with aggregated data (spoiler alert, it already is,) the big issue is opening it up to research arms and outside orgs.

[MrJim]

Health planning will be done with aggregated data (spoiler alert, it already is,) the big issue is opening it up to research arms and outside orgs.

This ^^. Such a huge dataset is extremely valuable - just ask Facebook or Google exactly how valuable data is. Once your data is sold off to third-party organisations, who knows where it will end up & who will have access to it? The level of anonymity is also extremely dubious, too. I have a very specific disability, & given access to so-called anonymous medical details, it wouldn't be difficult to work out my identity.

[spacein_vader]

What I will say is that all this data already exists, just in disparate places. Everyone seems to be assuming that GPs (who are private practices that sell their services to the NHS, not directly employed or controlled by them,) aren't already sharing their data with anyone.

I'd be amazed if at least some of them aren't, and probably not even deliberately. A small practice is unlikely to have a data protection expert analysing the details of their contracts for example.

[CAT-THE-FIFTH]

The take home message,is that you can't opt out of just having the data used for planning,it also means the government can give that data to any private company they want to. So its all-in or all-out.

[CAT-THE-FIFTH]

It seems this is an entire mess:
https://www.theregister.com/2021/05/...gp_data_store/

NHS spokesperson says one thing,but the reality is another. A recent article in the BMJ is concerning too:
https://www.bmj.com/content/373/bmj.n1325

There’s now a deadline, 1 July 2021, after which very large volumes of data will be extracted from GP records. Patients who wish to opt out must do so by 23 June. Not everyone is happy that this extraction is going ahead before agreement with all relevant bodies: significantly, the RCGP and the BMA have not endorsed this process.

Edit!!

I think I will try and opt out of all of this. At a later date if I feel that the systems in place are more robust,etc I can change my mind.