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What’s the point of a summary care record when it’s fairly obvious that the NHS’s computer system doesn’t work.
Don't really want to waste time weighing in on this thread because it's immensely complex, but the statement from the OP above is fundamentally flawed because there is no "NHS computer system". There are many hundreds of systems (possibly thousands). Interoperability is a major challenge.
“The peripheral neuropathy is a symptom of the condition”
Are you an alcoholic?
Are you an alcoholic?
Sadly I can no longer really tolerate alcohol.. 🙁
I've no idea why or if its even related to my other health issues but I can't really drink enough to get merry (2-3 pints) without paying for it for 2-3 days.. so I usually don't bother. (It's not like I can go and have a few pints with my mates and if I do go out I usually volunteer to drive)
The question at the surgery is always how many units do you drink per week ... which is a bit of nonsense for me as most weeks the answer is zero but I'm not teetotal or anything and have a glass (sometimes 2) of wine as I can't drink beer anyway 🙁 . (I had 3-4 glasses last week)
Sadly I can no longer really tolerate alcohol..
Well I guess it not kidney disease either then, we could be here all night.
Don’t really want to waste time weighing in on this thread because it’s immensely complex, but the statement from the OP above is fundamentally flawed because there is no “NHS computer system”. There are many hundreds of systems (possibly thousands). Interoperability is a major challenge.
£11Bn + overspend went into creating a system .. which does indeed seem to be many hundreds or thousands of non-interoperable systems... but recognising this surely what they need to do is fix the interfaces and processes to update the system.
How can the system of issuing NHS numbers even create duplicates so people have multiple unique ID's?
If these are inherited then why is there no priority to clean them up and prevent new ones??
I can't imagine HMRC or DVLA having the same problem ...even if its not 100% due to fraud?
How can my surgery be able to SMS me... and be able to set appointments and tests at the hospital but the results get returned by post (or in my case often never returned ???)
If you take DVLA they have completely switched from a paper based process to a digital process... road tax/SORN, MOT... but they still manage to allow you to apply by post or queue at the nearest DVLA if you want to...
How can the prescription process (for example) not be digital from start to end? It's 2018... FFS!
NHS records are many levels of magnitude more complex than dvla
I think some of you really have no idea how complex and huge the databases need to be
NHS records are many levels of magnitude more complex than dvla
I think some of you really have no idea how complex and huge the databases need to be
Compared to DVLA they might be complex and large but compared to a lot of scientific and industrial systems and databases they are not especially large or complex.
Imaging seems big... but try oil and gas seismic ..
Patient records seem complex but try a oil well... from its planning to drilling to production and maintainance to abandonment. Each well will produce GB per day or hour... each seismic survey is 100's of TB before it is even processed into multiple versions... and of course they use MRI and CT ... but the data is tiny compared to most of the data sets.
There are some State owned companies (I can't name for obvious reasons) that are running digital copies of their previous paper based processes even today... they have duplicate ID's... semi paper processes etc.
It is actually the paper process that cripples them... or more accurately the digitisation of their existing paper process to try and create digital process.
The NHS seems to function on paper.(or film).. even if that paper is also transmitted digitally...
I remember asking a friend who was RPO for a major trust why they still use film X-Rays and subject patients to high and un-nessassay levels of radiation (a decade ago) and he said because they need to store the films...
It looks to me that the NHS has digitised a paper process ???
It's not just about the size and complexity of the data. There are very complex considerations around data security, legitimate access, patient safety, care pathways, government regulation and reporting, to name just a few.
One area not yet discussed is that the summary record, or indeed the entire record, is only as good as the person who readcodes the conditions/results/consultations makes them. The possibility of any individuals record being comprehensive and accurate........
one of my current roles working in two GP surgeries involves both readcoding/scanning paper based communications from hospitals ( and there are a surprising number that still come in paper form) and readcoding electronic communications. I also summarise new patient records that come into the practices which involves reconciling the paper records with the electronic record that (should) have come via the GP2GP electronic transfer.
it is quite eyopening/shocking how many of the records that come electronically are incomplete or non-existent. By incomplete I mean significant events that are in the paper record have not been coded.for example allergies, significant diagnoses such as TIA's or dementia or operations such as hip replacements. This often happens to people who move surgeries regularly for whatever reason and the paperwork catches up (eventually ) but has not been added to the transferred electronic record. Also some of the systems used are not very compatable so the records are degraded. Patients that come from Scotland or Wales to England often don't have an electronic record that is compatable so it has to be recompiled from the paper records ( which can take months to arrive) and this new record is of necessity usually only the significant events, not individual consultations. It Is this stage that is often done poorly. I would estimate one record in four that I summarise requires modifying
regarding the comparison with oil well seismic records. Are there approximately 50million records being updated in some cases on a weekly basis?
Stevextc
Sorry dude but you really don't understand the level of complexity
I don't really know how to describe it but I use TRAK daily
Each patient record has many sections often with multiple subsections. Data entered in one section will often automatically be entered in another. Each data entry has to have a full audit trail and all previous entries must remain accessible
Different staff groups have different levels of access and permissions
Many entries will create alerts and prompt actions
For example: I admit a patient
I am prompted to fill a series of questionnaires to assess infection control risk 12 questions in three sections. Depending on the answers it will then prompt actions. Say it shows MRSA risk. It will prompt me to run an MRSA screen. So I go and take the three test swabs. Once I have these I go back into TRAK to order the tests. After completing another questionnaire with a series of prompts I order the relevant tests and it produces Barcode labels for the swabs. Simultaneously TRAK will alert the lab that the swabs will be arriving, put an alert on the patients results page.
If the swab is positive it will alert infection control. Put a warning signal on thir demographic page which is then duplicated on the header of every page of their record
This is for one routine test for one patient and this is a simple part of it
Everything has to be searchable horizontally, vertically and over time
More levels of complexity
Not only are there multiple levels of access i. e I can read all of it. I can write in some parts. I can order some tests but not others etc and there will be 30+ levels but also if I attempt to access people s recordd I do not have a need to that access request will set up an alert. For example accessing my families record or a patient not in my service area that will set off an alert. The lists of allowable access is individual to every user
Adding another voice and a 'you don't understand the level of complexity' note agreeing with TJ.
I work in NHS Informatics, and deal with this sort of stuff on a daily basis. What people get wrong, as I did before I started, is thinking that 'the NHS' is a single, big, coherent organisation. It's not, it's lots of little organisations that fight with each other all the damn time, that all came from different places and different bases, and that all think they know just how everyone else should operate. I see this first hand every damn day.
A case in point when it comes to systems. We're lucky, as a city, that our GP's only have one of two systems they use, EMIS or SystemOne - when I started, I think there were there were 9 different GP systems in the city. On top of that, because GP practices are independent businesses, they can choose to buy any additional hardware and software they like - ECGs, blood pressure monitors, etc - but the software doesn't always talk to the main GP system, or needs admin rights we don't grant, or a software update to a core system kills a loophole the 3rd party stuff has been using. Or, the one I've had fun with recently, the third party hardware needs a serial port connection to operate, and doesn't work over USB, so when you replace the ancient PC for a modern one the hardware can't be connected. And this is just in-house: the main Hospital trust we work with have approximately 100 different computer systems across 5 or more sites and however many departments, because each department holds their own budget and can choose their own systems. And that might mean the same department in two different sites (say, two A&E units) use completely different systems. Those systems - both the similar and the wildly different - don't necessarily talk to each other, because a lot of them are old and were never designed to. Some don't talk to the Spine, some are entirely standalone. Bed booking systems like PAS are completely separate to treatment systems, which are again separate to things like the pathology and radiology systems. The degree to which they'll talk to GP systems is it's own minefield - we can get pathology results through electronically, but not necessarily radiology. And when pathology's hardware fails - a system through which we push 10,000 blood tests a day - and it takes over a month to get the hardware repaired and the system up again, the blood tests get outsourced to other local hospital trusts who use completely different IT systems so results can't be transmitted electronically, and have to be sent on paper and manually input. Deep joy.
Someone else touched on coding, and that's another minefield. Those two GP systems I mention use two different coding sets, so your record in one system had to be 'translated' if you change from a GP on one system to the other. Theoretically that will all change when we move to SNOMED coding in the near future, but that had a completely different hierarchy structure, so all our coders will have to retrain and start from scratch - at point one of our system providers was talking about not having a dual-run period, it was going to be an instant switchover. You can imagine how much joy that would be. Even in just two code sets, GPS and practices code differently, even when we've given them a recommended coding schema.
Someone higher up than me, and with a better understanding of it all, gave the estimate that our city, between Primary and Secondary care and all the auxiliary and tertiary functions, generated in the region of 400 terabytes of data per day. And that's a conservative estimate of a single city.
So, you talk about £11bn like it should reform a whole national 'system': £11bn wouldn't even get our city onto a single unified platform, because you'd have to replace pretty much all the existing hardware and software across the board, and then find the time to train every single member of staff across, in my case, 103 GP practices in 135 locations in Leeds, plus a Hospitals trust over I think 5 or 6 sites, plus Community Healthcare across, again I think, 3 or 4, plus an Ambulance trust, plus, plus... And that's before you add in the complexity of our northern-most sites who tend to refer to Harrogate hospitals, or deal with systems interaction with the private healthcare providers, or any of the GPs and private companies operating under the Any Qualified Provider (AQP) contracts - who strictly should be using their own equipment and systems, not ours. And it would be an immensely political game, not just at the Westminster level, because to politicians of a'll parties the NHS is just another bargaining chop with the public. At a local level every lead GP, every practice manager, and every department head would have to have their say on what a system should do, what it needs to provide, how it needs to do it - some of them because of a preference and knowledge, some because a good friend of theirs just happens to be the Chief Exec of a company that makes things great piece of software... And none of them would agree with the others, because they've been partners in the past and fallen out, or because they have differing ideas, or just because they plain don't like each other, or because, or because. The final chosen system provider themselves, should it ever get as far as a tender stage, would then have their say on whether it can or can't be done, and how - as an example, one of our system providers was trying to tell us that they wouldn't support coding for the Accessible Information Standard, and that's a legally mandated thing. And then they'd have to mandate the level of support, both hardware and software, nationally. Not outsource abroad, preferably.
Stevextc, you talk about the NHS being on 'digital paper', and you're right, it is. Because a private oil company, if it's doing well, can afford to sink some of it's profit into a new company-wide system. The NHS cannot, because the money is simply not there. Why do you think WannaCry last year hit sites and trusts still running Windows XP? Because the funding wasn't there to upgrade those systems.
So, going back to the original question about summary care records. The reason they don't do what you think they should do is that they're still in their infancy, half of the systems don't talk to them, and every city and trust argues about what should and shouldn't be held in the record, never mind who had a right of access. The emergency level stuff - allergies and medications - is a good start, but is coded to differing degrees of accuracy and still needs to be checked to the best of a staff member's ability each time because litigation culture is taking over, and if they don't ask and you suffer, people stay trying to sue. There are projects in the works to try and improve these things but they're geographic: We have an input into a Leeds Care Record, held by the hospital trust, and the comms is generally there to get probably 85% of the systems city-wide to talk to it. But that's just for the city, the complexity of scaling it up to, say West Yorkshire wide is another exponential step. Convincing staff members to access it and use it - both at GP and Hospital sites - is another battle, and one that can't be won simply....
...aaaaa breathe...
At least in Scotland we don't have the fake competition and all hospitals Co operate. Gps are still independent though
I find even within the same GP practice the records are not available, not made or lost. A number of times I've mentioned the previous visit for something and they've got no idea what I'm talking about, and that's using whatever computer system they've got (in the last couple of years).
Hospitals though. I've been given paper records and CD of x-rays to take to my local hospital because they don't communicate and told me they don't trust sending it in the post. Local hospital seems to do most stuff on paper in big files and struggled to find my records for a while at fracture clinic (that's after struggling to even find a doctor in a busy clinic with no doctors). Send the stuff to my GP in the post. Not sure they got it, but previous hospital visits the records have been lost.
If the summary care stuff actually makes this work then I can see the point but not sure it does and it seems it's a different system in each area. It sounds also like it's not necessarily used even if available as I guess old habits die hard.
Complexity of integrating systems I can understand. Not that I know much about NHS systems, but coming from the software world doing integration work, I understand the complexity of even seemingly simple integrations. Worse when each client install with the same system have them set up in such mind bogglingly different ways that it's practically a custom integration for each one.
To clarify, because a couple of people have made comments about x-rays etc.
SCR won't hold imaging stuff, it's designed so a minimum dataset is there holding the stuff any clinician treating you in an emergency might need to know. Only the stuff that might genuinely save your life
From NHS Digital's own page:
"At a minimum, the SCR holds important information about;
- current medication
- allergies and details of any previous bad reactions to medicines
- the name, address, date of birth and NHS number of the patient
The patient can also choose to include additional information in the SCR, such as details of long-term conditions, significant medical history, or specific communications needs."
The stuff I've italicized is it's because that's in the extended record, it's is subject to it having been recorded or coded properly at your GP practice, and is also subject to having a GP who knows how to use SCR properly. NHS-D boast that 98% of practices are now using SCR, but the stats for input and views are fairly low - as they say, creation of the record is automatic, viewing of it isn't mandatory and a lot of GP's don't bother. If the practice has your full record why would they glance at a 1 paragraph summary?
Person Held Records, now they might make more difference in the long term. Ask a GP whether you can have access to your Detail Coded Record on their system and watch them cringe...
To be fair, I think there's a few valid reasons they might cringe - firstly, a lot of it probably won't make a lot of sense to the layman (I'm a layman who works in practices every day, and a lot of it don't make a lot of sense to me!), but it'd be easy to read things without a full understanding and reach an incorrect conclusion. Secondly, in a similar vein, there might be things in your record that a practice might validly not want to release to you - if you were a victim of domestic abuse, for example, and had visited your GP about it, if you then subsequently requested access to your record, there might be concerns that you may have been coerced into requesting it to find out if you'd been speaking to anyone about it. Thirdly, historic data occasionally contained colloquialisms written in an age before electronic data sharing was even a possibility - I doubt if much of it would have been summarised into the electronic record, but I can imagine there might be issues if you requested your record then the practice had to explain what FLK, GLM, NFN, etc, meant (funny-looking kid, good-looking mum, normal for Norwich).
Your first two are dead-on Pondo. We've also had queries from it Safeguarding teams about the right of access of parents to their child's record, if the child is coded as vulnerable or if there's any suspicion of abuse. Particularly if said child has things like contraceptive pills on their record etc.
The third point unfortunately is irrelevant, the electronic record you can get a hold of won't contain any free text input, only the details that are clinically coded, so the acronyms and the doctors opinion of you won't be listed unless they've coded you as, say, hypochondriac, which you'd hope they wouldn't be adding in without a formal psychiatric diagnosis.
Aaa, ok - so that PHR thing is purely what's been coded? Interesting - although I bet you're finding some GPs are honking about not having their personal, professional opinions included, in a "that Read code doesn't tell the whole story" kind of way! 🙂
Yup, and you can bet they're also the ones who code/ask for things to be coded at the highest point of the hierarchy, with the minimum level of detail, to save time. Because they can view the free text...
All of the transferable systems run on coding details only - aside from hospital referral letters, which might contain text detail if a GP wrote them themselves. If they left it to their secretaries, it will be minimum detail and coded detail only.
Stevextc, you talk about the NHS being on ‘digital paper’, and you’re right, it is. Because a private oil company, if it’s doing well, can afford to sink some of it’s profit into a new company-wide system. The NHS cannot, because the money is simply not there. Why do you think WannaCry last year hit sites and trusts still running Windows XP? Because the funding wasn’t there to upgrade those systems.
Weirdly it's the cost drivers when they are not doing well that drives the progress. (Most have been looking at 50% redundancy over the last 5 yrs not because of automation but costs and have been forced to do things right)
I've seen it all... and some State Owned Companies are ahead of private ...and hence I recognise the digitise the paper process not rewrite the process for digital then create the systems to support it.
What I see base don comments is what the NHS has done... trying to digitise a paper based process is not only ultimately pointless but costs more and takes longer.
A company I'm currently writing a report for just rewrote processes across a whole part of their business specifically to move it into digital. This will create an island initially but one with interfaces... and I'm currently writing up the plan for 2nd part of the business.... (literally right now)...
They previously started digitizing paper process... luckily only in one area of the business...
What happened is someone with enough power (Vice President) simply said "rewrite the processes"
DECADES of process was completely rewritten in about 3 months... with only 10 people because they just had the VP rubber stamp and tell all the moaners to shut up or find another job.
Its a huge success with those on the ground floor and those at the top level... lots of middle managers are pissed because they now have to do actual work... and are held to account when they used to just delay by not signing physical bits of paper
Problem is that model doesn't work for the NHS, they're like a conglomeration of thousands of independent companies all in the same industry, all funded in similar ways but ultimately independant. My area's Primary Care and Pyro touched on it earlier talkingvabout clinical systems, used to be eight or ten to choose from, there's still four in England (although Microtest are only in a handful amd INPS are shrinking) but no-one can go to a practice and say you must now use Emis/SystmOne/made-up interlinked new system.
And that's just one aspect of hundreds of systems in thousands of practices - my knowledge of secondary is limited but what I've seen of that makes Prinary Care look like an artisan baker compared to Warburtons.
The complex picture painted above is my experience but also doesn't take into account the motives of people and organisations involved Just for example where CSUs (could be other NHS organisations) choose different or bespoke systems compared to near neighbouring NHS teams, all makes them and their teams a little more indispensable. When you are talking about all the disparate provides opening up to (ahem) "frictionless" interoperability then obviously there is the conflict that they want to protect their customer base.
One way forward is for aggregators to provide the ability for patients to choose to share their complete record as and when with the clinicians they want to and this is being done in some NHS areas and overseas:
http://www.patientsknowbest.com/
I would bet that TRAK is one of the biggest and most complex systems worldwide
There are complexities unimaginable to anyone who does not use it
All paper records have been scanned onto it. Every test from wound swabs to mri scans are on it in full. Images in HD. That is Every test in the last ten years. Every note made in every patient notes. I will try to find out the size
TRAK is a bought in system used in a lot of places but customised for us
Is that NHS Scotland -wide, TJ, or specific to your trust? It's not one I've heard of, but I'm in Primary Care Informatics so not hugely familiar with hospitals systems. We do a lot of work with our local hospital trust, though, and I'm always a bit bemused by the sheer number of different systems they have.
We had a handful of GP sites on INPS, on three different versions of EMIS, and on a free others I can't remember now, but we're down to two and it's an 80/20 split, and getting closer to 90/10. Another local PCT (as-was) 'encouraged' all their practices onto a single system by funding it for the first few years, but GPSOC means we can't really do that. Pedlad's comment is even more complicated for us, the CSU failed so we're with a private company won who the tender, and frankly they're not great. Data that has to remain in the NHS for processing goes to a neighbouring CSU (North East), but the failed unit covered the whole of West and South Yorkshire and Bassetlaw. Now we're covered by a private company that win the support tender, pretty to their negotiations and top-up fees, and it's a ballache.
Synergy, Premier, Ganymede, might be three of the others, INPS until recently I think had a couple of different solutions. 🙂
Of the two remaining big players, one has a reputation for being very unhelpful when it comes to playing with others.
Pyro
It's NHS Lothian that I know for sure. We don't have the competing trust nonsense in Scotland and I think it's also Scotland wide or is being rolled out Scotland wide. It's only hospital tho and community nursing. Not gps