Sharing of medical records within NHS

WobblyDog

For the past couple of years I've been referred within the NHS to various hospitals for investigations into a health condition. I've found that there's very little communication between them. I had some presumably expensive tests done in a London hospital, in several big shiny machines, but 6 months later the specialist in my "local" hospital has no information about the tests done.

I'm more amused than worried, because the health condition is not currently serious. I've resorted to emailing the limited test results I have to the various hospitals. Is this how the NHS is supposed to work?

Cyclizine

There is no centralised record system shared by all health facilities. If you have been referred to a different hospital for an investigation, then the results should have been communicated back to the referrer. Each hospital uses different systems. It is a mess.

BananaRepublic

I recently had a potentially serious eye issue that turned out to be minor, requiring visits to A&E and eye units at several hospitals. I was shocked by the antiquated approach to IT and lack of sharing. I suspect that creating a common system would be a nightmare due to the myriad of systems out there, millions of existing patients records, and the cost.

Gers

interesting question - I understand that in Scotland all the NHS boards use the same system and can access patient information when needed. My mum's GP can see the results of hospital tests before being sent the e-letter from the relevant departments.

I don't know how far this extends. I believe that patient consent has to be given for this sharing.

alexpeck

This is an old thread that popped up in Google so I will just add a little to it as it may have been updated elsewhere in full - in England, Wales and parts of Northern Ireland the information systems NHS Trusts use are unique to themselves (because they buy them from suppliers themselves, and which of them would have spare funds to 'pay' for the connection to others?).

In NHS Scotland, the smaller population (a bit more than the population of West Yorkshire + West Midlands combined) means it would not make financial sense for each hospital to run their own systems. This works well for that geography. England tried to do the same in the early 2000's but there were objections from all the different suppliers protesting that one commercial company could potentially have the entire market and create a long-term monopoly. As a result, different systems were bought by different Trusts.

There are sharing systems for all results and tests, but they are mostly manually initiated. That manual initiation takes time, which NHS staff usually are short of. They aren't also widely publicised internally as patients tend not to travel round that much (people tend stay near where they are familiar during treatment - the same region).

But in summary yes, results can be electronically shared between the different Trusts in England / Wales / NI, it's just not as seemless as it appears in Scotland (due to the size differences and the need for different companies to provide the systems).

Hopefully that's not confused things more!

uknick

The NHS started to create one database with medical information shareable across the whole NHS under Labour in 2002. But, after spending about £10bn the idea was then scrapped in 2013 as it was considered too difficult.

https://www.theguardian.com/society/2013/sep/18/nhs-records-system-10bn

They tried again but scrapped it in 2016 due to patient confidentially concerns.

https://www.theguardian.com/technology/2016/jul/06/nhs-to-scrap-single-database-of-patients-medical-details.

Classic case of giving software companies a blank cheque to design a project managed by ever changing managers so that the original aim is long forgotten.

Reminds me of the saying in MoD, give the RAF a brief to design a toaster and they'll end up with a device to toast bread built into a fast jet.

alexpeck

Indeed - that millennial project Nick was also just for records too (i.e. a replacement for paper packs of notes - not for the underlying individual systems like Biochemistry, Pathology etc.). To digitise the entire health system in any country like the UK would now be pretty much impossible due to cost (no government would now commit £xxbillion centrally for something to be delivered potentially in another governments time) and for all the legal challenges that would take place (no commercial provider would allow a monopoly in a state system). Other EU countries have come close to a central health I.T. system, but nowhere in the world has achieved the nirvana yet! Even huge countries like the US are well 'behind' due to the nature of their commercialised health system so we as a country aren't 'too bad' (even if not great!)