Encouraging the NHS to build a small web service
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My mum was diagnosed with an aggressive, stage 3, breast cancer recently.
This isn't really about her case. In the UK, the NHS offer breast cancer screening every 3 years for women from the age of 50 until they turn 71. [2] Its stated purpose is to catch cancer early to reduce mortality. It's done via a fragmented set of regional IT systems that have evolved since the 80s with algorithms that are poorly understood by those using them let alone patients. And separate screening programmes for those with higher genetic risk, who've previously had breast cancer, trials looking at expanding the age range, etc.
Mum moved house a few years ago, told her local GP (primary care physician?) practice that she was due a mammogram and they assured her she was on the list. This is the only way women can check if they're on the list - phone the receptionist at the GP practice, then wait for a letter to arrive.
The letter didn't arrive, she wasn't on the list. She found a lump and was screened privately. The NHS programme missed an opportunity with her. It seems the GP practice didn't add her into one of the databases that feeds into another database that a software system then queries for who to invite.
Her case is seen as unique. But it seems it's not really just her. For instance, over a hundred women were missed by a screening programme for those at higher genetic risk in NHS Lothian. [4] An independent review [5] found 5_000 women were missed on the regular screening programme from 2009-18 not due to IT failure or policy error, i.e. due to user/administration errors - they're just ones they confirmed. That review took place because over 120_000 women were missed from their last scan - a significant number, yet everyone involved overlooked this. The blame falls partly with complexities around the way women are called forward, the assumption that the NHS knows what it's doing, the friction of having to phone and ask about it, etc. Over 120k scans missed even though they're there to reduce mortality, to save lives. And many more scans have been missed in the last year due to covid, perhaps making screening even more important now.
I'm aware that when all you have is a hammer, everything looks like a nail. Unsurprisingly on HN, software is my hammer of choice, so here we are.
It strikes me that if all, or initially even a subset of, the disparate databases pushed a link between the universal ID (NHS number) and the next screening date into a public facing web service [1] (there's already an OIDC provider [3]) then women could see their date due, reliably know if they were in the system, overdue a scan, save a few phone calls and crucially, if omitted, they would have something to point to, to flag up that they (and potentially others) had been missed before finding a lump, or potentially worse, not. We have something similar for car tax here [6] and no one dies if that's missed.
I can't be explicit about what I'm after posting here, I don't know, just appealing to the wisdom of the crowd. FWIW I've tried emailing NHS Digital and my Member for Parliament. Both replied with little more than cookie cutter responses which suggested they didn't grok the issue, probably my fault as much as theirs but I'm running out of ideas.
If you've read this far, thanks, really.
[1] https://i.imgur.com/iXNgWYC.png
[2] https://www.nhs.uk/conditions/breast-screening-mammogram/when-youll-be-invited-and-who-should-go/
[3] https://www.nhs.uk/nhs-services/online-services/nhs-login/
[4] https://www.scotsman.com/health/hundreds-at-risk-of-breast-cancer-missed-screening-after-health-board-error-3537353
[5] https://www.gov.u...
72 comments
[ 3.5 ms ] story [ 150 ms ] threadGood luck
We [1] are one of the companies who are trying to make "this" happen. "This" meaning: providing a holistic, complete health record for patients (including appointments, radiology, lab results, etc.). It is not trivial: one of the largest failed IT projects in history is the digital integration of various NHS systems (https://www.theguardian.com/society/2013/sep/18/nhs-records-...). Our goal is to provide patients complete access to and full control over [2] their medical data. So we're in the process of building what you are proposing, but it's not a fast process.
It is primarily not a technical problem -- it is a problem of trust, coordination, aligning incentives, legal issues, etc.
[1]: https://patientsknowbest.com [2]: laws and regulations don't allow 100% control
I found it difficult to de-register on attempt 1 through my GP. I see now you can email PKB support to do it directly as a patient so I’ll give that an attempt. But frankly services without an automated online de-register smell.
Edit: it seems this will only remove my email from being contacted and my data will still be held. (Yes, I know it’s encrypted etc).
I suspect I’ve already lost. My GP and the hospitals I regularly visit must be users. I have no choice. The business model rattles me. I understand and accept the NHS using private suppliers for IT (eg Azure, design and dev partners). But a model when I’m effectively a customer of the 3rd party is not a situation I’d choose to be in.
One of the reasons 3rd parties like us hold your data is because apparently private sector is often more capable of iterating and implementing working systems at lower cost than governments. I am also often torn on what should be publicly owned and what should not, but the governments' track records show that it is not trivial to run engineering teams under direct state control.
Hence the original comment that it’s the business model that grates - NHS could have engaged and remunerated a supplier without selling me as a customer. The 2 out of 5 trustpilot score shows I’m not alone in my thinking.
(I don't think you're sold, but maybe this is not the best forum to discuss this. Happy to continue through mate at companydomain.)
Simon Bolton is their CEO equivalent. firstname.lastname@ nhsdigital.nhs.uk
https://twitter.com/simonrbolton
This is a sales job. Sell them aggressively (in the sense that it solves a problem, not necessarily monetarily). Failing to get traction with NHS Digital, reach out to potential non profit charities that are advocates for cancer screening and womens’ healthcare. Let them be the force multiplier asking why a solution you propose isn’t used or provided by the NHS. Let the value proposition speak, and do not be apologetic about being loud about it.
I'm trying Cancer Research UK too, though their policy team's email address on the website bounces as it's for whitelisted recipients and the generic email response to tell them about it says to expect them to get back in a week.
Bah! Simon Bolton doesn't want my email. I'm reluctant to publicly tweet him a link to this, largely because my twitter account has followers and this is tangentially about my mum's own health.
There is also quite a lot of work going on in this area that might be of interest: [https://www.nhsx.nhs.uk/key-tools-and-info/digital-playbooks...]
My suspicion generally is that fixing small things at scale is more likely to lead to enterprise level results than trying to fix big things in a particular silo. But, it's just a feeling.
I wonder if OP has spoken to NHS Digital.
OP, there's a trick to navigating bureaucracies, you just bounced off the armour.
You need an insider, someone you can have an off-the-record chat with.
You should also remember that the British public says they love the NHS but they don’t like paying for it. Current health care funding per capita is well behind other equivalently wealthy nations [3].
[1] https://en.wikipedia.org/wiki/Health_and_Social_Care_Act_201...
[2] https://www.kingsfund.org.uk/publications/health-and-care-ac...
[3] https://www.ons.gov.uk/peoplepopulationandcommunity/healthan...
Appointment booking is probably the most obvious clusterfuck. I still can't book appointments with my GP online.
We got a referral to ENT for a child. They sent us a letter, telling us to call them. On the phone they said they have chosen an arbitrary appointment date for us and will send the details in another letter. When we get that letter, if the time isn't convenient then to call them back to rearrange it. Madness!
It is very very slowly improving, so I think eventually these sorts of brain dead issues will mostly go away. Hopefully while I'm still alive.
You can, you just have to decide which of the myriad fly-by-night apps you want to (give access to your data and) use.
Bafflingly insane IMO, the list of random scammy sounding private companies I was given a non-exhastive no-recommendation list of when signing up to a new GP. Why isn't it just one 'NHS GP' app?
I say this as a staunch Conservative. What are they possibly going to compete on?
I can't. As I understand it, it's organised separately by each surgery. So you might be able to but I can't. That also explains the use of sketchy apps!
> Why isn't it just one 'NHS GP' app?
Completely agree. They already have an app!
My mother turned 60 late January this year, she received a bowl cancer screening kit which she did and they recommend she come in for a colonoscopy, which identified she highly likely had bowl cancer. 3 Weeks later she received the results for a CT with contrast scan which found no evidence of cancer else where in her major organs and nodes. 3 Weeks later she is having surgery to remove the cancerous bowl.
All for free.
Tell me again why America has the highest rate of Stage 5 Cancers over 65.
GP isn’t making any claims that the US system is better, they don’t even mention the US, they’re pointing out that the NHS has some pretty serious deep seated issues. Which quite frankly should be obvious to anyone who’s interacted with it.
Knee jerk responses like this are precisely why attempting to fix the NHS is political suicide. It impossible to even have a open discussion out the problems the NHS faces without people piling on to defend the NHS and drown out criticism.
Personally I worry about the future of the NHS. The inability to have an honest and open discussion about the future of the NHS means it’s just going to continue lumbering on until it collapses completely from extraordinary pressures it’s placed under.
Agreed. Unfortunately, it often seems that "honest and open discussion" rapidly segues into rancour. The NHS is a behemoth, and healthcare can be astonishingly complex.
The NHS was designed for different times and different needs. It's been hacked about and is struggling to hang together. It's a political football, and it's been under-funded for years, probably decades. Cash isn't the only way to fix things, but it's a big part.
Note, I'm neither from the UK nor America, and looking in from the outside this aspect of the UK discussion comparing and contrasting with America seems to be the wrong idea.
5 years apart. Once in York, once in Bedfordshire.
But it doesn’t matter —- it’s anecdata.
The NHS has a lot of data available. Some is public, some available only to those that have a commercial relationship with them.
There are areas in which the NHS is exceptional — generally those areas which require no personalisation of care and a mass-production style of work (e.g. cervical smear tests and their associated health outcomes) - and then there are the many areas in which it really is appalling.
Lionising the NHS doesn’t help it. Opening discussing its faults does.
The NHS has seasons, for instance a few years ago it was chlamydia season and so I was forced to go through a chlamydia screening, but it proved impossible to get tested for any other STD. It is possible that your mother was saved by the colonoscopy season.
I don't follow you. GPs go through specialist training and assessment (general practice is, perhaps paradoxically, a specialism). The comparison you draw seems to be with someone who is unskilled. Can you explain? Perhaps I'm missing something.
While it seems true that GPs are the gate keepers for referral to secondary care, this is largely due to factors that are outside the control of GPs themselves.
I'm not sure I understand your complaint. Do you expect to have direct access to pediatricians and gynaecologists without referral? There simply are not enough of them for that. I'm curious; without being identified as someone who needs specialist care, why would you want access to someone like that? The -icians and -ologists within the NHS deal with specific situations. Perhaps you think you'd receive better care if you simply had direct access to secondary care. Fair enough.... so, that itch you get occasionally, or that nagging ache... are you going to visit the neurologist, or the rheumatologist, or the radiologist, or....?
> GPs have budgets, are very vocal about it
I've literally never heard a GP mention budgets to me as a patient. Or are you referring to GP representation in the media?
> would rather run silly experiments for months than writing a referral (the latter impacting on their budget).
You say that GPs will knowingly experiment on their patients to save money. Are you sure that's what's happening?
> My girlfriend’s GP wanted to change her birth control pill because it was too expensive
Is that actually the reason they gave? Or something you've inferred? Did they, perhaps, want to provide your girlfriend with the service she requested, using what they had at their disposal?
You spend 20 years prescribing paracetamol and homeopathy to old ladies and you eventually stop being a real doctor, like somebody who takes a PhD in computer science and then spend 20 years replacing hard disks in a call center.
> I'm not sure I understand your complaint. Do you expect to have direct access to pediatricians and gynaecologists without referral?
Yes, in Italy that is the norm and it sounds silly that you think it’s a weird expectation. That’s probably one of the reasons why the British infant mortality rate is 50% higher than the Italian.
> Fair enough.... so, that itch you get occasionally, or that nagging ache... are you going to visit the neurologist, or the rheumatologist, or the radiologist, or....?
I’m not a hypochondriac, so I don’t go to random doctors on a weekly basis. But given the taxes I pay to fund it, I’m expecting a Western European healthcare system and not this thing that would be below par in a middle-income country.
> I've literally never heard a GP mention budgets to me as a patient. Or are you referring to GP representation in the media?
Sure, that’s what my GP said, she didn’t have a budget for that. I’ve left out the part where I said that it didn’t matter because I had a private insurance and the NHS wouldn’t have to pay for my treatment. At that point she totally lost it and started yelling that the Tories are privatising the NHS and insurance companies are their accomplices or some other crazy thing like that.
> You say that GPs will knowingly experiment on their patients to save money. Are you sure that's what's happening?
Rather than referring my partner to a gynaecologist, the GP kept making up pseudorandom diagnoses for roughly 3 month, until my girlfriend gave up on him and decided to go to a private doctor (it’s not the same person that hates private insurances and at the time I didn’t have an insurance). The private gynaecologist identified the issue in 20’ and prescribed a 3 day treatment that fixed the problem. 3 months of randomness vs 20’ of professionalism.
So, to answer your question, I was being sarcastic: the GP wasn’t experimenting, in the sense that he knew what he was doing, he was just making stuff up to not spend his budget on referrals.
> Is that actually the reason they gave? Or something you've inferred? Did they, perhaps, want to provide your girlfriend with the service she requested, using what they had at their disposal?
My girlfriend had been using a pill for years, after testing a few under the supervision of a gynaecologist (again, that’s the norm in Italy, GPs don’t come up with birth control pill suggestions). Then she moved to the UK and the British GP told her that she should change the pill, because it was too expensive. My girlfriend said she was fine paying for a more expensive pill (in Italy you have to pay for it). Then the doctor went on explaining that the NHS would have to pay for it and that she should use too much public money. I eventually had to intervene, because my partner’s assertiveness is below 0 and the doctor was putting her health at risk to save 5£ per month.
Any GP doing what you say would lose their job and not be allowed to practice again.
My understanding is that you (and maybe your partner) had specific expectations about who you would see and what they would do for you. Your expectations were not met, and you've interpreted this very negatively through some basic misunderstandings of how the NHS works.
> My girlfriend said she was fine paying for a more expensive pill (in Italy you have to pay for it). Then the doctor went on explaining that the NHS would have to pay for it
Despite the fact that you clearly dislike this, it is indeed true. You can't ask an NHS GP to prescribe a specific medication and offer to pay for it yourself. The NHS buys meds and issues them through prescriptions. That's pretty much it.
Just to be clear: I fully accept that not all experiences with GPs are perfect (and neither are all experiences with consultants).
If you want to tell a doctor what you want and have them give it to you, stick to private care. Your opinion of NHS GPs is clearly very low, and unfortunately seems misinformed.
You've asked for direct access to specialists, and in England you do have direct access to sexual health clinics where you don't need to be referred by GP, you don't even need to tell your GP, and where they'll test for just about everything.
The first step would be spending as much as other countries do before judging if a different structure would be better.
Among Italian expats we wonder how is it possible that a paracetamol dispenser with some ni-no-ni-no cars is so expensive.
Anyway, what am I saying, of course socialist works, were just not doing it right! All hail the NHS!
It was once said "Prussia was not a country with an army, but an army with a country"; the UK is not a country with a health service, but a health service with a country.
Tory government says it's still deciding if it'll be one of the arbitrary eight hospital projects they'll fund.
They made nursing a degree course, put tuition up to £9kpa, and removed both the nursing bursary and final-year medicine tuition grant... and wondered where all the new doctors and nurses went.
You're not right. It's not foolish to want to protect the NHS, it's foolish to trust a Conservative to fund it adequately. And yes, some of these problems were caused by poor policy of their Labour predecessors.
This kind of thing is only ever said by people who've got no idea how the NS works.
Just today Javid announced his intention for a new, major, change to the way that primary care will work.
If it were this simple, one would think they would have done it already. One of the issues the NHS have is that they have so many disparate systems that don't know how to talk to each other. They're almost certainly aware of this and examining ways to unify them - after all, finding better technological solutions is why NHS Digital exists.
Maybe what they need to do is scrap the existing disparate cancer screening databases and create a new centralised one. Like they did for covid.
I assume it’s mostly a funding/business priority issue that’s stopping them. Or maybe privacy/infighting of data ownership within the various NHS entities.
Anyway, the data is significantly more fragmented than you can ever imagine. GPs are technically (it's very odd) private companies. They can have a reasonable amount of leeway to do things as they see fit. Which means just at primary care level, there's a massive data quality issue. Then you get on to secondary care (hospitals etc) and there's just as much separation between the different trusts/health boards etc. Then each country, have their own NHS, Scotland, NI, Wales and England.
So it seems like an easy fix, but the reality is miles more complex than you might initially think.
The hard part is probably migrating all the existing data. It'smuch easier if you can start from blank, like for covid.
IME of NHS IT, simple technically is not necessarily simple politically. I'm more than open to the idea that I'm missing something, I definitely will be even some things aren't insurmountable, but until someone can tell me explicitly what that blocking issue is I'm reluctant to make that assumption.
There is not a "UK NHS". There are 4 NHSs in the UK, one each for Scotland, Northern Ireland, Wales, and England. They really are different, with different laws and staff and government departments.
When you're googling for NHS England policy you want to avoid nhs.uk, which is the patient facing stuff, and use inurl:england.nhs.uk When I do that and search for "Breast cancer screening" I get this page: https://www.england.nhs.uk/cancer/harnessing-innovation-in-c...
"Our series of annual Innovation Open Call competitions is an important way in which the NHS Cancer Programme identifies and supports the most promising innovations that will help us to deliver on our ambitions. The successful innovations will be tested and evaluated in real-world settings, so that those that will make the biggest difference can be rapidly implemented across the NHS. In this video, Professor Richard Gilbertson, Chair of the Innovation Expert Advisory Group, gives an overview of the competition and some of the exciting innovations."
> disparate databases pushed a link between the universal ID (NHS number)
Little bit optimistic there. NHS Numbers are a mess.
I've also tried taking systems through NHS innovation programmes in more recent years. That's been a whole other level beyond what I experienced with the RIS, all the same issues plus fighting for funding from people who told me they wanted off the shelf and not anything new (or, it seemed, innovative). And I don't need funding so I'm loathe to go that route but I can't dismiss it, it's an option.
https://nhshackday.com/
There is no formal route to production, but you might meet senior people who could help.
I feel like the secret agenda in the UK is making NHS so bad, people would beg to have some sort of health service, costs a fortune like US but at least cuts the pain.
So, although I understand where you are coming from and the naive belief that they want to improve the service, I think for the politicians it’s not the case. They also don’t have courage to come out and say we want to make NHS private, as it would cost quite a loads of votes.
This is how I am able to explain the service quality, stupid phone calla you need to make and totally inefficient management.
I know what it's like to see or experience something at the patient end of things and feel the urge to do something about it. It's difficult to find obvious ways forward with that in the NHS system, and the common ways for patients to raise complex and niche issues - MPs or the NHS' public-facing channels - can produce dispiriting responses.
I get the impression you're in England, so my assumptions here are about NHS England. There's been a push (and requirement) in recent years for Patient and Public Voice (PPV) - closer public involvement in the design, production and governance of NHS services - so there should be increasing opportunities for the public to act on their experiences. In practice, there doesn't seem to be much of an open invitation to public involvement in digital at the national level yet.
As you didn't mention it, you might be interested to know that, as well as the breast screening report you mentioned, there has also been a recent review of adults screening services [1]. That's led to NHSX's Digital Transformation of Screening programme [2], with objectives directly relevant to your issue. There's a contact email address that might reach someone more likely to grok it and/or explain the programme's routes for PPV input.
There's also some information about the current digital screening services, including named heads and leads [3]. Maybe a direct approach to one or some of them about how you can influence the issue (and highlight the shortcomings of the approaches you've tried)?
[1] https://www.england.nhs.uk/wp-content/uploads/2019/02/report...
[2] https://www.nhsx.nhs.uk/key-tools-and-info/digital-transform...
[3] https://digital.nhs.uk/about-nhs-digital/our-organisation/ou...
The NHS spent over £30bn in today's money on a largely undelivered and undeployed IT system that they canned.
It is institutionally incapable of efficiency or common sense ideas like this. They are immune to it. 1.3 million direct employees and no one with agency. And yes, it is frustrating. You can see it at the micro levels as a user too. It is bizarre and costly.
If you fancy a box ticking non job that's not helping anyone achieve anything they have you covered in the thousands though.
On top of that laws have actually been changed to ensure small or single person contractors who kept things running from working for the NHS. So now they are wholly dependant on large consulting firms.
Must have driven some people mad.
> no one with agency.
That's killer isn't it, absolutely killer.
NRL aim to create pointers and provide access through to data in disperate data stores. Currently supports document stores but plan is to extend this for other data types. https://digital.nhs.uk/services/national-record-locator
NBS The national booking service looks to have been rolled up for COVID but the intent is having a place to book and manage appointments for procedures you are recomended to have (intially focused on vacinations). https://digital.nhs.uk/coronavirus/vaccinations/booking-syst...
Then you have BARS that is focused on standardising disperate booking formats so that they could all then be usefully referenced using NRL possibly then linked to NBS. https://digital.nhs.uk/services/booking-and-referral-standar...
I'm not directly involved but is some details of the breast screening applications here, I suspect the above would need to be connected up with this to all work together. https://digital.nhs.uk/services/screening-services/breast-sc...
I know the call and recall service is currently being replaced for cervical screening with CSMS (Cervical Screening Management system) so I would suspect that if its not already on the todo list that a replacement for breast screening would line up based on the success of that. Much of the aims of this service are to solve some of the problems that you mention but for cervical screening. https://digital.nhs.uk/services/screening-services/national-...
All of the above links will have some form of contact details also if you would like to contact the various teams.