[HN Gopher] Encouraging the NHS to build a small web service
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Encouraging the NHS to build a small web service
TL;DR I think the UK's National Health Service (NHS) should build
[1] but I don't know how to persuade them, or even if I'm missing
something and they shouldn't. --- 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.uk/government/publications/independent-breast-
screening-review-report [6]
https://dvladigital.blog.gov.uk/2014/05/29/making-vehicle-
information-clearer/
Author : cs02rm0
Score : 60 points
Date : 2022-06-11 18:48 UTC (4 hours ago)
| rantallion wrote:
| > It strikes me that if all, or initially even a subset of, the
| disparate databases pushed a link between the universal ID
|
| 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.
| yardstick wrote:
| The NHS app on my phone provides my basic medical records and
| covid records already, at a touch of a button.
|
| 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.
| leni536 wrote:
| > 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.
|
| The hard part is probably migrating all the existing data.
| It'smuch easier if you can start from blank, like for covid.
| forsakenkraken wrote:
| I worked in NHS IT for a number of years. I've been in other
| industries for a while, but I doubt things have changed that
| much. It's not a funding or business priority issue per se.
| Tho having said that the NHS is focused on providing the best
| care to the most people. That does mean that some people fall
| through the cracks.
|
| 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.
| gelfs wrote:
| The most likely route of getting something like this going would
| be to add cancer screening status to the NHS App
| [https://digital.nhs.uk/services/nhs-app]. The NHS app already
| provides access to a patient's basic medical history and
| prescriptions.
|
| 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...]
| [deleted]
| nickdothutton wrote:
| Unfortunately the NHS is [broken]-- -- -- --[sub-optimal] (choose
| where on the spectrum you wish to stick your pin)
| "architecturally". I dont mean technically, although yes there
| are problems there. I mean in the way the various parts of it are
| arranged as a whole and regionally. To fix this will require
| another major reform and since the UK has (foolishly IMO)
| collectively decided the NHS should be the national religion...
| nobody in power is going to reform it. It's like the 3rd rail of
| British politics. Touch it and you die. A real shame.
| HL33tibCe7 wrote:
| Among the Europeans I know living in the UK, the NHS (the
| system - not the excellent staff) is a laughing stock. There is
| a better way, but I worry that the public of the UK are so
| militantly resistant to any change to the NHS' structure that
| it'll never be changed.
| Marazan wrote:
| The UK spends far less per head on Health than other European
| countries. It is incredibly cost effective.
|
| The first step would be spending as much as other countries
| do before judging if a different structure would be better.
| mmarq wrote:
| No, the UK spend on the NHS slightly more than the EU14
| average. The NHS is more expensive than the Italian and
| Spanish healthcare systems, while being significantly
| worse.
|
| Among Italian expats we wonder how is it possible that a
| paracetamol dispenser with some ni-no-ni-no cars is so
| expensive.
| HL33tibCe7 wrote:
| I agree, it should be funded more, but I think there are
| definitely problems which are inherent to the NHS' current
| structure. A lot of mismanagement, beyond the point where I
| can just blame it on underfunding.
| etothepii wrote:
| The OP makes the point that there already is a primary key. It
| strikes me as the standard enterprise response to say, we can't
| fix your thing til we fix the whole thing, and fixing the whole
| thing will never happen.
|
| 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.
| flir wrote:
| Refactoring, in other words.
|
| I wonder if OP has spoken to NHS Digital.
| flir wrote:
| I see they have.
|
| 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.
| daedalus_f wrote:
| You say that, but the government _is_ currently engaged in a
| new reform of the NHS. Having previously pushed
| decentralisation, competition and increased use and engagement
| with private providers (Health and Social Care Act 2012 [1])
| they are now reversing their position and instead centralising
| control of everything, abandoning competition, disbanding many
| of the bodies they created and recreating old ones with new
| names [2]. This constant churn of politicians with new ideas
| about how to "fix" the NHS is a big part of why it's broken.
|
| 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...
| b3nji wrote:
| Sad, but true. NHS is the new religion of the U.K. Remember the
| mindless banging of pots and pans in the street for them? When
| quite a lot of the hospitals were empty? I can vouch for this
| because I worked in the biggest hospital in Brum.
|
| Anyway, what am I saying, of course socialist works, were just
| not doing it right! All hail the NHS!
| scrlk wrote:
| I found the "pots and pans" thing back in 2020 to be eery.
|
| 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.
| akpa1 wrote:
| Back in the 1950s when the NHS was created, it was doing a very
| different thing to what it's doing now. People are living
| longer, there's more treatment options for everything, there's
| new branches that never existed - all kinds of stuff. The NHS
| was never designed for the sheer scope and magnitude of what
| it's doing now, and it shows.
| IshKebab wrote:
| I completely agree. If you criticise the NHS on Reddit you're
| instantly branded as a Tory sympathiser who just wants to
| destroy it, even though it's pretty obvious that there are
| loads of things that need to be improved.
|
| 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.
| Marazan wrote:
| Except the NHS has went through multiple massive reforms. Like
| the Conservatives instituted one after they came to power in
| 2010 (after famously promising not to institute a massive top
| down reform pre-election they promptly went ahead an did
| probably the largest change since the formation of the NHS)
| Zariel wrote:
| I will counter this with the following.
|
| 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.
| michealr wrote:
| To counter your counter and to refocus the point on the
| potential improvements for the NHS. I think the parent is
| correct with regard to the NHS there are a lot of issues with
| it. And with meaningful consequences for people's health and
| well-being, but having followed discussions about it there
| seems to be an overt focus on comparisons to America and
| American healthcare costs. The UK and by extension the
| discussions on issues with the NHS would be better served by
| comparing and looking at healthcare costs and outcomes of
| other neighbouring peer countries. Such as the Netherlands or
| France. Or even further afield in the likes of Singapore.
|
| 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.
| acta_non_verba wrote:
| The NHS has been unable to send an ambulance to me in two
| separate cases in which the operator confirmed I was high
| priority.
|
| 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.
| [deleted]
| mmarq wrote:
| Your mother was quite lucky, the NHS doesn't do much
| prevention compared to other healthcare systems. Everything
| goes through GPs, that are the medicine homologues of a guy
| that works in IT and can set the background of his Drupal
| blog. GPs have budgets, are very vocal about it, and would
| rather run silly experiments for months than writing a
| referral (the latter impacting on their budget). My
| girlfriend's GP wanted to change her birth control pill
| because it was too expensive, and he has a budget (it's not a
| problem anymore, because thanks to Brexit that pill is no
| longer available in the UK). Children are not assigned to a
| paediatrician and women are not assigned to a gynaecologist.
| Women go through pregnancies without ever seeing a person
| with a degree in medicine, it's all handled by midwives. If
| you want access to western medicine you either have an
| insurance or you'll have to spend 200-300PS per visit. For
| some weird reason the NHS has you covered if you need a
| magician, such as an osteopath, or some magic homeopathic
| pills.
|
| 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.
| avianlyric wrote:
| Just because the NHS doesn't fail in all scenarios, or even
| most scenarios, doesn't mean it doesn't have serious
| problems.
|
| 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.
| [deleted]
| stuaxo wrote:
| I thought NHS Digital had the remit to build services like this ?
| desas wrote:
| Not sure how much help it is, but NHS Digital is mainly for
| England, and perhaps Wales, a lot of it's work isn't for
| Scotland. NHS Scotland's equivalent is the [NES Digital
| Service](https://nds.nhs.scot/about/).
|
| Good luck
| DanBC wrote:
| There's quite a lot to mention here.
|
| 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.
| forsakenkraken wrote:
| Just to say, this is pretty spot on. Lots of messy data, many
| different sources of messy data. It's significantly more
| complex than you'd hope.
| Angostura wrote:
| If you are looking into this, you should be aware of the Spine
| https://digital.nhs.uk/services/spine - the system which should
| coordinate this stuff
| sz4kerto wrote:
| I'm very sorry for what she, you and your family are going
| through, I really hope she'll be OK.
|
| 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
| robga wrote:
| I don't doubt your sincerity and commitment but I find PKB a
| real problem. I don't want this 3rd party to hold my
| information.
|
| 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).
| toomuchtodo wrote:
| Have you looked up folks in leadership or decision making roles
| at NHS Digital on LinkedIn and reached out to them directly?
|
| 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.
| afro88 wrote:
| Is there something you can build that takes an NHS ID and does
| all the checks on the disparate systems automatically for said
| person? That might be the quickest way to making a difference
| here, and if it gets traction would attract the attention of
| people at NHS.
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