It's time to celebrate the abysmal efforts to go paperless in the NHS It is five years since the UK's National Health Service (NHS) — one of the largest health providers in the world — missed its planned deadline to go paperless. The idea was that it would rid itself of reams of paper for more efficient electronic health records. As if to mark the event, a study emerged this week which showed …
The nice thing is that paper can go with the patient
Online records means that everyone in contact with the patient has to look up their records on 'the system'
So continually asking an elderly/confused/in-pain/unconscious patient their name+DOB+how do you spell that, to confirm who they are everytime anyone has to work on them
(Bonus points for a records system which doesn't flag current patients in ER so they have to search through a million Singhs or Wangs in the region)
It might be helped if a cheap tablet or ebook reader was given to each patient, or they had an id number QR code tattooed to their forehead
My wife was at A&E with her mother 2 weeks ago. Yes, the paper records were with the patient. However, they were then separated giving a further 30 minute delay to treatment.
This was for an 80+ year old with a dislocated hip who had already waiting 2 hours for an ambulance and had been waiting in a corridor for another 3 hours.
In my limited experience of using healthcare services (give it time) surname and DOB are usually used as the most salient uniquefying key when you're visiting a new or different department. NHS number would be perfectly cromulent too, but a lot of people don't necessarily know theirs and people/places can be (somewhat) justifiably prissy about the numbers being broadcast. There's also the need to expediently look up someone's data vs the need to make sure that the person is the person you're expecting, and not somebody who's maliciously impersonating another/psychotically impersonating another/confused and potentially about to receive an unnecessary and unwanted procedure.
ID cards might go some way to addressing such issues but they don't seem likely to take off and there's still a bunch of not-necessarily-edge cases to consider.
Couldn't they just have one piece of paper with basic information and a bar code or QR code to scan
You wear a wrist-band with your name DOB and other essential info on it. I seem to remember there's a QR code as well - not that anyone ever scanned it. And all the medication runs and regular blood pressure tests, the first thing they asked me was my name and date of birth.. Which would seem to make the wristband redundant. I suppose it might be useful if someone passes out or is unresponsive though.
And it's clear that, in a less well-run ward, the staff don't even know the basic medical info of the patients - my first stay in hospital, when I was nil-by-mouth, I wasn't offered a drip (as is mandated for t2 diabetcs) and I had to go into a hypo and press the emergency button for them to actually fit me with one.
The second stay (3 weeks later, after the infection that the first stay had failed to clear out had already eaten my thumb cartilage and one of tendons attached to the thumb joint) they were much better. Had the proper intake assessment (no - he's fully mobile, doesn't need bed sore mitigation, can take himself to the loo) and the fact that I'm T2 diabetic on DMARDs[1] was properly put into my notes.
[1] Disease modifying antirheumatic drug - something that suppresses the immune system to hopefully damp down psoriatic arthritis. I stopped taking it when I went into hospital with an acture infection from a cat bite. https://en.wikipedia.org/wiki/Disease-modifying_antirheumatic_drug
The bad thing about paper is that it doesn't always go with the patient.
By the late 20th century, all the printout needed was a wristband. That way, you don't need to ask "an elderly/confused/in-pain/unconscious patient their name+DOB+how do you spell that,". You can either type in the number on the band or read the QR code with the little gizmo attached to your USB port.
Managers would never allow "a cheap tablet or ebook reader" anyway. They prefer iPads. Lets use the wristband instead!
Or in reality drag the patient over to the single bar code scanner that is attached by RS232 to a single computer at the nurses station
The scanner costs >10K because it is 'medical grade' and is only supported on Windows7
No you can't use the camera on your iPad because it's not ISO13485 and apple won't tell you the sensor manufacturer
"The nice thing is that paper can go with the patient"
How it's done in Switzerland :
- All records are electronic, input directly at point of contact by practitioner / carer. This saves both paper and the necessity of retyping in at a later stage (also saving time and reducing possibility of a transcription error.
- if patient needs to be handled in a hospital situation of being transferred between departments / wards etc, admissions will print a sticker sheet which is a couple of dozen stickers each carrying basic patient details (name, dob) and a barcode. Any time a sheet needs to be printed, one of the stickers is stuck on the sheet. Same with blood samples, medication and the patient themselves.
Simple but extremely effective
In my recent incaceration in hospital, the only people who didn't use paper were the people coming round to ask what we wanted for food that day. *Everyone* else used paper.. (blood pressure, blood glucose, bed sore check - all noted down on paper. And, given the legibility (or otherwise) of most of the writing I would *seriously* doubt whether they would bother to digitise it..)
In fact, looking at my complete medical record, most of the readings never got that far. I suspect that, on discharge, a lot of it probebly got shredded or burnt.
Paperless is and always has been an instrumental goal, not a terminal one. As another story reminded us not so long ago: Bad software destroyed doctors memory. If they cannot do paperless right, keeping dead trees is the lesser evil.
The joys of IT megaprojects and creaping featurism
We need an NHS computer system to replace faxes.
Ok, sounds like email, go on
And it needs to be secure with physical access keys for doctors, but the keys have to be bypassed in an emergency by paramedica etc
The data has to be held locally for data protection but has to be instantly available everywhere in the country in case of an accident
It has to support attached medical data for everything from a blood pressure cuff to a 5d functional MRI. It needs to handle that remaining 1970s CT scanner in Stevenage that only uses 8" floppies. (Yes it would be cheaper to replace it, but that's a different budget)
The contract has to get to an approved supplier = IBM, Crapita, CapGemina.
And it has to demonstrate cost savings
which was useful.
I avoided having a fax machine*, until someone gave us one so they could fax stuff to us.
But no supply of paper.
I'd have left it at that.
* I did set up WfWG3.1 to accept fax on a modem, and mix it with email.
And around then we started passing some very old and boring or new and repetitive paper through a scanner, so if you didn't mind the stairs you could turn a piece of paper into a picture of it and transmit it.
The local health system here was the victim of a cyberattack two months ago that took out practically everything - test results, appointments, medical notes, email and even telephones. Patients presenting for urgent care were asked to bring any medical information they might have with them. Data is largely recovered and systems are coming back online but the system is still not fully operational.
While it may make sense for a health system to go paperless, it might also make sense to have the patients keep paper records, just in case...
I've just been shunted off to a new practice due to the old one closing. Three weeks after the transfer started my electronic records are still missing; apparently something to do with the Spine (how I wish I could conjure up a Spın̈al Tap joke on demand) and it strikes me that things were much quicker, easier and more efficient when they used paper records. Which also involved less paper.
Well yeah, one of the local hospitals routinely has a timescale of up to a month for the paper records (or some subset thereof) to get from one end of the not-very-long corridor to the other if they don't lose it altogether. But I've noticed there seems to be even more problems with the electronic records, which are also clearly much harder to use: I've seen more than one doctor throw their arms up in exasperation during appointments.
Hospital records systems are fun and interesting, in the proverbial sense. They are long term, multi-million projects where everyone from politicians at all levels, health care standards authorities and even healthcare staff (strange but true, even they want to have a say) have various opinions on what they want. Add to this the natural consequence of expensive projects: various form of bribery[1]. So currently parts of Sweden is in somewhere in the process of maybe implementing a US system that is more designed to facilitate US style insurance company billing rather than a functional public health system. And the idea of modifying it to be workable for the way health care works in Sweden, for something as tiny as a part of Sweden: surely you are joking.
And proper health data protections? Have no fear, we will guard our access to them to the best of our ability.
[1] The brown envelope with cash is so old school and definitely illegal, but we are looking to hire someone in the next year or so, someone with experience with this kind of stuff. Quite a well paid position too, I'd imagine. Do you know of anyone that would be a good fit?
I had this incident in mind: https://www.bbc.co.uk/news/uk-northern-ireland-18497161
I remember the hospital because it used to be just along the road from my lab which meant that during the rotating power cuts in the troubles we were spared them because the hospital power had to be kept going.
When I was in my mid-twenties, the NHS lost my paper records.
This was a long time ago, when the NHS was mostly paper-based, and presumably had current working expertise in managing paper records.
The GP I was registered with in my mid-twenties later claimed I was never one of their patients, so my later new GP simply started with a blank sheet. There was no other option.
It strikes me that it would be useful if both the patient and the healthcare provider had a copy of the records, with some kind of reconciliation/update mechanism to keep them synchronised, because in my experience, both patients and healthcare providers are very good at losing records irretrievably (I had a relative who could lose a sheet of A4 they had been given within a couple of minutes of having been given it.)
When a major government contractor took over getting gp records from old practices to new practices, they stacked up to the extent we were posting the contents. The covers might turn up 6 months later.
The old inefficient public service got urgent ones across the country in a few days, across town Esther quicker. Non-urgent, not quite so fast.
Or you know, people could build software properly.
Have you ever worked outside of the NHS? Businesses do things like closing teams all the time and transferring work from one team to another. They have functions like "Transfer Branch" where all the data gets transferred, almost instantly, reliably. Worst case it will be overnight but we're generally past that stage. There's no drama to this. If there was an issue in the software it would be fixed within 48 hours, and never recur.
Have you ever worked outside of the NHS?
Not sure if that was aimed at me, but... well, yeah. I've never worked for the NHS. I have however worked for DEC which during the Greasy Bob years became its own entertainment with huge quantities of paperwork driven by the sudden explosion of managers we enjoyed.
Our envy of the modern world is giving ambulance workers time off for male menopause, rewriting documents to say chest feeding then consulting on undoing PC stupidity and absurdity, trying to figure out if males should be on female wards or not and spaffing money on agency staff because nurse training is constrained by government just to name a few 'important' things to our glorious envy of the world.
The idea they could figure out how to solve their IT issues is neigh on impossible as a comment above explains very well- https://forums.theregister.com/forum/all/2023/10/05/pick_your_year_its_time/#c_4738261
Too big to manage, too expensive to afford.
@Yet Another Anonymous coward
"So your thesis is that the problem of NHS IT is that little-endian processors are woke ?"
My theory is the NHS is too big to manage. Instead of dealing with the real issues we have virtue signalling to the few noisy nutters instead of the primary focus of delivering healthcare. The NHS is a big beast which is plagued with central planning. Again look at the examples I mention and ask if any sanity is there? And you jump to the woke parts but what about the supply of nurses constrained by government?
Should we be clapping for the NHS or should we be freeing nurses and doctors to do their job and allowing the market of supply and demand dictate staffing? We have a huge monolith trying and failing to implement IT regularly and only recently managed to get off the fax machine.
My theory is the NHS is too big to manage
The NHS as you fondly imagine it doesn't exist. The is no *National* health system except for the budgetary reasons that the DoH funds most of it.
Each local region does their own thing. Some Trusts essentially are outside the local region and so essentiall do their own thing. The result is a patchwork of often-incompatible systems (even using different paper forms that record some of the same data but omit other bits and add their own fields.
Which makes creating an overarching system virtually impossible because no two regions/hospitals can agree about what each screen/input dialogue *has* to have.
And guess where this all started? Yep, it was Magiies lot who essentially decided that local autonomy was best, even if it (effectively) broke up the NHS. Guess what - public funding and "supply and demand" are two very different opposing things. "The market" is remarkably bad at making sound and ethical decisions because it panders to the lowest of impulses - the desire to make money at all costs. Look at the current situation the NHS is losing record numbers of trained doctors and nurses because it won't pay the market rate for those skills.
Similar to why outsourcing IT is such a bad idea. You replace 10 people that know what they are doing and know the environment with 3 overworked distant people who know neither any in-house technology nor how things hand together.
Which is why we took our infrastructure management back in-house and *actually* manage to get stuff done with a high degree of competence, unlike how it was before we brought it back in-house.
We know some of it's been digitised because 24,000 letters got lost in the system and were never sent...
Just in case anyone has no idea how that much money could be spent on paper records, here is one answer:-
A large city centre hospital near me has no space left on site so they have a separate secure facility a few miles away, sort of an industrial estate type building. A fleet of vans, and a team of people, go back and forth 24/7 to send/retrieve patient records. How anyone thought this was cost effective/efficient/timely as the hospital expanded over the decades is hard to fathom, but here we are and hopefully their digitization process is a little more advanced than some.
Over the past few year or so my wife's cardiac and, particularly the last few weeks, blood pressure problems - together with a few of my own have given me chance to observe the local hospital trust and especially the local A&E.
Firstly they do have a trust system. It has links to a national system so they can look up NHS number from name, DoB & post code (as can online booking for flu & covid jabs). The only connected printer in evidence at A&E reception spits out a wrist band with name, NHS number and a QR code. That solves the patient ID as they're moved around. BP testing devices have an RJ45 so presumably could be networked but aren't - it would probably be impractical - so readings have to be typed in but doctors and nurse practitioners can review what's been done. The cardiac ward in the other main hospital in the trust has hand-helds which look like smartphones but I suppose might not be which are used to register the readings. I'm not sure how the doctors review this on ward rounds but in the A&E offices they can review everything without needing a paper record. On the face of it it appears that this trust is largely if not entirely paperless apart from the wrist bands, at least on a functional level although it's possible there might be a paper back-up. I don't know the origins of the system but I doubt it's written in house; it will be bought in.
Our GP also has a practice system so they also are largely if not entirely paperless, at least on a functional level. I know this is system is bought in, in fact I'm pretty sure it runs on the provider's server.
The need for paper, then, seems to be communicating between trust and GP and possibly between trusts (SWMBO was sent elsewhere for a TAVI last year). This set me thinking: bearing in mind that perfection is the enemy of the good, let alone the workable, is it possible to build a bottom-up system instead of some grand plan, especially one to be handed over to a major data-broker? How does email work, or the web, or any effective communications system? It has scarcely any central requirement other than data standards - communication protocols and defined message formats and a hierarchical, distributed registry. There's no need for everyone to use a specific client. There's no need for MSPs to use the same server software. Providing the clients and servers follow the protocols and handle the same message format everything works. It should be possible to build something on those principles.
A quick online search shows that there's a lot of information about medical exchange message formats. Pick one, preferably one that's extensible. Specify a core amount of information and a go-live date. It doesn't matter how different the internal databases of the various providers are, all they have to do is to provide an interface to read or write that subset of data to that format. Now we have to decide how to exchange data about the patient. As the system evolves extensions for extra data can be defined and added in phases.
On the basis that the patient is registered with a GP (not all patients may be but let's start with what's practical) the GP (in practice the GP's service provider) is the obvious place to exchange information; it's the GP who will refer patients a lot of the time and even if a hospital trust encounters the patient as an A&E walk in the GP will need to know eventually. Clearly a network is needed to transmit messages securely and I'm assuming that NHS.net can provide this and that most, if not all, trusts and GPs have NHS.net addresses. Again "most" can be the starting point.
What the network needs to provide is a central registry to provide identify the patient's GP and I'd be somewhat surprised if the system which already provides the lookup for NHS number didn't already include this; and a store and forward message handling system which looks remarkably like email. It may well be that the GP service providers could handle the latter
TL;DR A system could be built bottom up. No massive central contract is needed. Software would be an add-on to existing medical record systems by the providers of those systems. Not every patient nor every possible item of data might be served by this but the system could start earning its keep from go-live and grow out from there. Perfection is the enemy of the workable.
"TL;DR A system could be built bottom up. No massive central contract is needed. Software would be an add-on to existing medical record systems by the providers of those systems. Not every patient nor every possible item of data might be served by this but the system could start earning its keep from go-live and grow out from there. Perfection is the enemy of the workable."
Exactly this is what is needed. A cynic might note that there's very little in there that could be turned into a multibillion pound contract and that's why it hasn't happened yet
Oddly enough the Veterans Health Information Systems Technology and Architecture (VISTA) was developed pretty much along the lines you described. It also happens to be public domain software.
This out-of-date Politico article goes into the background of its development Politico: A 40-year 'conspiracy' at the VA . Since that article was written, the programme to replace VistA with a newer ERP system from Oracle Cerner has been 'paused'. That said, the plan is to restart the roll-out of the replacement system in 'Summer 2024'.
As you say it doesn't NEED to be complex but it would be if the NHS implemented it! A set of defined XML or JSON fields should just about do it
EMail is also simple. I've written a couple of email clients as part of large applications and the main trouble was handling emails from a certain software house who's own email client would send and accept stuff that didn't match the standard. The amount of exception programming I had to do along the lines of "the standard says this header must be there but if it isn't start guessing until something works" was rather high.
Years ago - so long ago I've forgotten most of the details - a client of mine had a contract with the NHS. If you lived in England and Wales back then you've probably benefited from the end product and the recollection was part of the thinking behind my OP.
Somehow - I wasn't involved with the details - we got the server an email address on NHS.net (or maybe there was some predecessor) and received data by encrypted email. I then had to parse these emails to load into the ERP system. The record formats hadn't been put together with enough planning and the ad hocery as more use cases got added got to a familiar point: "If I'd known that's where you were going I'd have started it differently." If the contract hadn't ended about the same time as I retired I'd have refactored it.
It didn't need anything special in respect of email clients. AFAICR the existing Unix mail handling sufficed to drop the files into the processing so no need to write email clients.
So much can be done with local processing and message passing with agreed formats.
I guess the problem is a single big outsourced operation. It needs in-house to set the standards, say batches of extra interface specs every 6 months. Given that there are, I believe, a number of suppliers for systems to be interfaced there would be competition to keep them relatively honest - "That's the spec, you've got 3 months to go-live. The others will be doing it, so it's on your market reputation if you can't."
And this would be government IT outsourced to someone like Crapita. Don't assume, with upgrade costs and new software every few years, tech would cost less or work better. Consider all those letters left unsent in a folder recently. Two lots, weren't there? And scroll down for the El Reg story 'Ambulance patient records system hauled offline for cyber-attack probe'.
It is unwise to accept figures produced by journalists for headlines, but it is likely that the storage of paper records is as badly handled as everything else the government do, and could be done for a good deal less if anyone involved was competent.
a billion quid for a resilient storage system that can't be hacked by any criminal anywhere in the world looks like the bargain of the century.
the NHS (and others too numerous to mention) spend far too much time and money fucking about with computers when they should be getting on with the day job.
I'm not knowledgable in these matters, but let me share my confusion.
Why do electronic admin systems have to be all singing all dancing, include everything systems? Especially as it appears that none of these systems can be built within the time frame of their own obsolescence, at the earliest. And possibly not at all. Birmingham's Oracle lack-of-a-system seems an obvious example here.
Why aren't we identifying stuff that can be better done by computer and providing systems that do that specific kind of stuff by computer. Should we be having systems that combine internal communication, HR files, accountancy, stock ordering, record keeping, catering and building management? Or just a system that can do, say, finance. And one that can do building management. Then when they work, maybe someone can look at ways to automate passing maintenance costs to the finance system automatically, instead of having someone entering them manually. Or combine other pairs of related activities- say finance and stock ordering.
I can only speak for part of your laundry list, since i work with hospital laboratory systems (LIS): all the other stuff does not generally happen in medical grade systems, and is definitely separated from the medical records. The medical systems talk, in our case by sending XML/ASTM files to each other through interchange middleware.
The closest interaction to outside systems I can think of is that our laboratory systems can produce a monthly billing file, that is manually transferred to the the financial/billing system: I literally move the file from one server to another, manually, on the first workday of the month. Files actually , since the blood bank system is separate.
There is a two-fold quandary: we want -- and have to -- protect patient data from unauthorized access to match laws and regulations. On the other hand one really want the medical staff to quickly and easily can access the relevant medical records in an emergency. Preferably nationwide, since people persist in traveling outside their local region, and even occasionally need urgent medical care there.
The upside of all that paper being stored for long period is that it is not returning to the atmosphere (CO2.)
Perhaps the NHS can offset some of the costs with carbon credits. :)
Records of defunct patients could be permanently archived in old worked out coal mines (carbon capture. :)
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