Cycling UK Forum

Dogs first, now Cats, we're next. Here's an idea, if you want to use any NHS service you have to be chipped so your records can be carried with you. Waiting lists will vanish overnight.

Friends who work in our nhs It describe a system that sounds like a challenge to put it mildly. I was chatting to a couple of them the other day on the subject. They were talking me through the difficulties of a particular issue which is reporting on local patients who have long term treatment in the kidney unit. I was busy pouring scorn and being snippy as is my wont. But after the guys had run through some of the challenges I soon shut up.
As we now know from the Horizon inquiry evidence, all large scale it systems have issues and the bigger the system, the bigger the issues.
I like the idea of a chip and would probably subscribe - not least due to the attraction of having one's entire medical record available quickly should one collapse... however I think we're probably still years away from it.

Nobutseriously in rich countries such as the UK the most underused technology in healthcare really is autoidentification.

But it should carry an identity that is used as a pointer to the information rather than to carry the information around with the patient.

And for the near future the sweet spot is barcodes rather RFID or implanted chips.

Jonathan

Like others I have friends who either have or do work for the NHS. Given the massive problems that they feel that they have encountered with semi-functional IT systems I’d say that getting more involved with IT would be a big mistake. IT can be an enormous aid to good but when it goes wrong (which it certainly does) then it’s a disaster.

Wasn’t there some recent crisis in London when an IT system was hacked with resultant major disruption? … and then there’s always someone - wether it be in governments or otherwise - wiling to misuse technology.
https://www.theguardian.com/society/art ... ber-attack

Carlton green wrote: ↑10 Jun 2024, 9:06am ...
Wasn’t there some recent crisis in London when an IT system was hacked with resultant major disruption?

It's not yet resolved and there's an urgent call out for Group O blood donors as a result.
https://www.blood.co.uk/news-and-campai ... or-appeal/

Please consider donating, whether you've done it before or not.

Jonathan

Give the job to VW-Audi.

It seems that I can take my car to any place in their empire of dealerships, and they know everything about it, from production line to service history.

When it comes to healthcare, even now it seems that data-sharing across the NHS is very weak, with GP and hospital only loosely linked, and a proneness to go round loops multiple times.

I’m being a bit facetious, but it is frustrating that medical data aren’t well-shared, and I wonder whether there might be a model in which each individual, not the service, acts as data-custodian, with the services being granted access each time by the individual.

Nearholmer wrote: ↑10 Jun 2024, 9:28am ...
I’m being a bit facetious, but it is frustrating that medical data aren’t well-shared, and I wonder whether there might be a model in which each individual, not the service, acts as data-custodian, with the services being granted access each time by the individual.

This approach is often described as Personal Health Records (PHR). Many of the big suppliers have tried it, but I don't think that any have been successful.

The patient can become either data custodian or more deeply involved in the control of "records".

One of the massive problems is that healthcare professionals need to make important decisions when the patient isn't present or available.

Many of the current interesting sharing projects in England are being run by Integrated Care Systems rather than nationally. Usual advantages and disadvantages of doing it locally.

Jonathan

It's one of things that sounds both straightforward and a great idea... if only! I'll raise just one issue - units. You might of thought, like me in my ignorance, that there'd be a universal standard... but from my nhs colleagues say, truth is it's more like the tower of babel out there.

simonineaston wrote: ↑10 Jun 2024, 9:45am It's one of things that sounds both straightforward and a great idea... if only! I'll raise just one issue - units. You might of thought, like me in my ignorance, that there'd be a universal standard... but from my nhs colleagues say, truth is it's more like the tower of babel out there.

Is that unit as in unit of measurement?

Yes, that's a problem. But even with consistent units many results of clinical investigations aren't transferable.

And the whole dataset of healthcare is enormously more complex than those used in finance, commerce, entertainment etc. That's one of the two big barriers.

Jonathan

Yes, you've put it better than I did, Jonathan
I took a Btec in (takes a breath..) Medical Physics and Physiological Measurement in the early 80s so I'm probably in a better position than most to get my head round the complexities of the idea of a neat & tidy individual digital medical record. My guess is we're miles away from a successful, effective universal solution, indeed, it may be we'll never reach one, what with political and economic constraints, an' all... Still, never say never, eh!?

Thankyou

The biggest changes since then have been the ubiquity of digital interfaces on those (and other) devices and the enormously easier communications, both local and wide-area. Back then every project included doing something new and clever with networks, and now that layer is almost entirely off the shelf.

Which leaves the massive problem of what the data means and how to describe it in a way that's suitable for computers. And people.

(And the other big barrier.)

Jonathan

Nearholmer wrote: ↑10 Jun 2024, 9:28am When it comes to healthcare, even now it seems that data-sharing across the NHS is very weak, with GP and hospital only loosely linked, and a proneness to go round loops multiple times.

Everyone is terrified of falling foul of GDPR. The fines for doing so are enormous. It really stymies council healthcare systems (care in the community, council-run care homes etc) because it hugely restricts things like cross-referencing a person's medical records between the care home, the GP and the hospital.

I get that obviously there need to be stringent protocols in place for privacy, confidentiality and so on but the time it can take for even simple referrals is a by-product of that (plus other factors like chronic under-funding for a decade...)

Nearholmer wrote: ↑10 Jun 2024, 9:28am ...
When it comes to healthcare, even now it seems that data-sharing across the NHS is very weak, with GP and hospital only loosely linked, and a proneness to go round loops multiple times.

I’m being a bit facetious, but it is frustrating that medical data aren’t well-shared, and I wonder whether there might be a model in which each individual, not the service, acts as data-custodian, with the services being granted access each time by the individual.

I wonder if the data sharing issues are aggravated by concerns over the Government seeing our data as having monetary value to commercial operations and seeking to sell it (sometimes with questionable anonymisation).

I have no issues with my medical data being shared across the treatment sides of the NHS, no concerns about the NHS using my medical data for their internal planning. I have no concerns about my medical data being shared for medical research where the results of that research are publicly available (in effect a Creative-Commons of the research results). I disagree where my medical data are passed to private for-profit companies to help in their quest for ever larger profits.

For example, I have (and continue) to make my medical records available to research organisations on a long term basis eg for dementia research. But that was a choice I made after checking on the nature of the research, how that manage my data and uses my data and the research results are put to. In fact I have released information beyond my medical records to such groups eg including DNA test results because it is investigating the condition not seeking profits.

Ian

Psamathe wrote: ↑10 Jun 2024, 12:58pm I disagree where my medical data are passed to private for-profit companies to help in their quest for ever larger profits.

Yep - medical records are worth a fortune to the insurance industry.

Most of my job these days is about the IT side of medical equipment management, which tends to fit in to neat boxes one hell of a lot better than people do, and a lot fewer boxes at that, and the side-effects of losing data are overall less worrying (and also less legally actionable!). And just getting old data in to shape in my one board area is a mountain of work.

Across Scotland the various Clinical Engineering and Medical Physics departments are trying to get a national reporting system in place so we can see who has what, what they use for maintenance schedules, how much they pay, their data protection impact assessments etc. so we can generally sing from the same hymn sheet across the country. Everyone's onside and the folks concerned know what they're doing, but it's still damn hard (aside from the technical aspects, just finding the time on top of what we're already doing) and the folk who might notionally implement it at the national IT level have caused us some pretty serious face-palm moments with their particular take on what we're trying to do.
It's pretty simple in principle, but there's a lot of detail and a lot of devil in it.

So, yes, universal digital patient records are a Good Thing, but I don't expect to see them Real Soon Now.

Pete.