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Systems differ and patients die

by Frank Schnittger Tue Feb 7th, 2023 at 06:48:18 PM EST

The failure of healthcare information support systems to provide a fully integrated and portable digitised personal medical history to aid healthcare professionals in making timely and efficient diagnostic, treatment and care decisions has become an open sore in Irish society, leading to much public debate. I felt moved to share my experience of such systems in the Irish Times today:

Cross-posted on Slugger O'Toole

A chara, - Nearly 20 years ago I was asked to review the implementation of a digital patient record system at a major general hospital in Ireland. The chief executive couldn't believe the number of problems being encountered with the new system and wanted an independent evaluation of where the primary problem lay. The IT department was blaming the software supplier, the software supplier was blaming the IT department, and everybody was blaming "the system".

After an exhaustive review it became clear that the software simply didn't live up to the extravagant claims made for it by the software suppliers' sales and marketing staff. It worked superbly in sales presentations, but less so in reality. Over 600 "bugs" were identified in testing, and these were to be fixed in subsequent releases. Unfortunately, most remained unfixed for many releases and some even reappeared having allegedly been fixed.

Every time a new release was installed, it required another round of testing by staff who already had a full day's work to do. It was utterly demoralising for them to have to retest software they had already tested several times only to find many bugs unfixed and some new appearing or even some previously fixed bugs reappearing. A lot of expensive administrative and clinical time was wasted.

In the meantime, paper records had to continue being used in parallel with the digital system, and these files were often duplicated or lost somewhere in the system. Patients on trollies waiting to be admitted could be "lost" altogether to the system as the emergency department had finished with them, but their details had not yet been entered into the in-patient system. The handwriting was frequently illegible. Tests results from prior admissions or consultations weren't always available or appended to the file.

If this was the situation in a relatively large and advanced general hospital, you can imagine the situation in the country at large. It was clear to me that rather than each hospital trying to implement a different system from a different supplier, there needed to be a single national system with standard functionality selected and mandated for all hospitals and related specialisms and services, and this needed to be installed and tested once in one hospital for the benefit of all having previously been exhaustively evaluated and tested by IT and clinical specialists.

My brief ended at that point, but it appears that no one within the HSE was prepared to take on the responsibility for the selection, testing and implementation of a nationwide system. It was left to local hospitals and specialisms to plough their own furrows who were then naturally reluctant to trade the familiarity of their own systems for an unknown new system, centrally imposed.

Migrating from an old to a new system is always a painful process, as both have to be run in parallel until all problems are ironed out.

A culture of avoiding responsibility for difficult tasks appears to pervade every level of management in our public service. It is always easier to soldier on with old systems and avoid confrontations with staff who have gotten used to doing things in a particular way. There are no rewards for outstanding achievements and no consequences for failures which are always carefully defined as collective rather than the responsibility of particular managers.

Staff become frustrated, disillusioned and cynical. Costs skyrocket as examinations and tests are duplicated. Diagnoses and treatments are delayed. Clinicians have to make judgement calls with incomplete information. Management layers multiply to no discernible patient benefit. Best practices in systems in use elsewhere in the world are ignored. No wonder the best staff leave. This is not a process that can be managed by politicians. Nothing will change until our public service management culture of avoiding responsibility for difficult tasks is changed, and changed utterly. - Is mise,

I have not been professionally involved in evaluating healthcare information support systems since, so many of my observations above may be out of date. I would welcome the observations and experiences of other posters here to provide a more up to date picture of the current state of play. However, I have also had more recent end-user experiences of healthcare systems both in Ireland and Spain which might provide some pointers.

About 8 years ago I suffered a stroke in Spain. I was unable to type, use a mobile phone, drive, or walk without dragging a foot behind me. I attended the emergency department of a local public hospital in a medium sized town in Spain in the evening and was admitted. Overnight they conducted a large number of tests which hugely impressed my medical relatives who worked in one of the largest hospitals in Ireland. Those tests would only have been performed 9-5.00 on the following day in Ireland.

I was discharged the following day when the symptoms had abated and given a large file of test results for my personal GP in Ireland and advised to see a neurologist as soon as possible. I made a private appointment and saw a neurologist the following day in a private hospital near the airport from where I was due to fly home that day. After an examination he opined that the stroke was caused by bleeding from small blood vessels in my brain but that there was only a 25% chance of a re-occurrence and that no further treatment was necessary. He did, however, advise I see a heart specialist and suggested I make an appointment at reception.

The receptionist took my details and asked me to sit in a waiting area. Shortly afterwards I was called to see the heart specialist. On reviewing my file he had some concerns and recommended I have an MRI scan. I explained I was due to catch a plane home in three hours, but he said not to worry, just knock on the last door on the left of the corridor and come back to see him afterwards. I did so and the MRI was done shortly afterwards. The specialist examined the MRI and said there were some matters which needed to be attended to and gave me a copy of the MRI images on a CD-Rom to take home to my own doctor. I made my flight with time to spare.

My public hospital admission was free and the bill from the private hospital (which was later covered by travel insurance) came to about €400 - about the cost of an MRI scan alone in Ireland at the time. My heart specialist in Ireland found the MRI scan to be of a high standard, inserted some stents into my arteries, and devised a treatment plan which I am on to this day. However, the symptoms of the stroke had never abated entirely, and I would never be able to play tennis again - my hand eye co-ordination was shot, and I had very little acceleration off my right foot.

Four months later I travelled back to Spain and decided to attend a physiotherapist who was also an osteopath (and Professor of Osteopathy at a large city university). He had treated me several times before for Achilles tendon, Plantar fasciitis, tennis elbow and various back, neck and shoulder musculoskeletal injuries. On each occasion I had recovered fully after only one or two sessions which surprised me as friends with similar injuries often had to attend a physio for numerous sessions.

I was also aware he employed a range of complementary medical techniques although we had never really discussed these. Sometimes, depending on the injury, he would give me a right going over which made me wonder whether modern practitioners were descended from medieval torturers. At other times the treatments were relatively gentle, and on two occasions he barely touched me at all. I didn't care so long as it worked, which it always did.

On this occasion he performed what I can only call a form of finger-tip acupuncture. After one session I was back playing tennis again to my usual (poor) standard. I now know why the friends who had originally recommended him to me referred to him as Jesús.  To recover full functionality four months after a stroke seemed to me to be little short of a miracle.

I recall these anecdotes here to illustrate a number of points:

Firstly, that lengthy waiting lists for either public or private medical care are not universal or unavoidable, and neither need the costs be outrageous. What matters is timely, appropriate and expert care.

Secondly, the data gathered in investigating ailments is yours, and should travel with you wherever you might have a medical episode and need treatment. It saves a lot of time, money and medical resources if medical histories are available, and tests don't have to be repeated.

Thirdly, that a patient centric healthcare system can be incredibly efficient in terms of patient as well as professional time. Services and the associated data generated need to be co-located and integrated.

And finally, that the benefits of good healthcare systems in terms of well-being and future productivity can be enormous. Timely care can save a lot of complications later. Accurate and time-series diagnostic information can improve diagnoses, treatment and outcomes greatly.

With the current focus on the costs of healthcare systems, we must not lose sight of the potential for productivity improvements, and the benefits of doing it well. I could have ended up with a very low quality of life and dependent on others. Instead, I can still lead an independent, productive, and fulfilling life (within my own natural limitations!).

We really need to mobilise all our societal resources, medical, social care, administrative and technological to manage our healthcare systems much more productively and efficiently. It is not rocket science, but some of our healthcare administrators may need to have a rocket placed under them to allow our clinicians achieve their full healing potential.

Healthcare budgets have expanded enormously in the last 20 years, but how well have we actually used those resources to good effect? Life expectancies and cancer survival rates have improved, as well as the quality of life for many. But there is so much more we could do to achieve our full potential as a caring society. The elimination of outrageous waiting lists would be a start. Allowing specialists who should be eliminating them to profit by treating the same patients privately ahead of the queue for the payment of a bribe fee, would be a good second step. We are effectively incentivising them not to eliminate the waiting list.

I have never been admitted to the hospital whose initial implementation of digital patient records I critiqued. I sincerely hope their systems are working now and that their patients can access their records whenever and wherever they might need them in the future. But still today, when I attended an outpatient service at another hospital, I was required to fill out a lengthy paper based form asking questions I had previously answered, and which should already have been on my patient history file - if they had one.

Fifteen to 20 years ago, I was doing deployment and support of open-source hospital software (my company partnered with a public research hospital which did the development).  Most of the other players in this "market" were private companies with private solutions.
In France, what was striking was the IT poverty, especially of smaller hospitals : typically, one half-time IT specialist and three servers in a broom cupboard.  
To attempt to get around this problem, which meant that smaller health institutions simply couldn't afford to host and run our solution, we put together an offer of cloud hosting, based on best practices etc, and it turned out that the costs for the institutions were even more out of reach for them.
Data sharing was fairly primitive at the time, I believe that it's fairly functional now (though the Macron government, incredibly, attempted to impose a Microsoft solution partly hosted in the US, contrary to EU data regulations!)

It is rightly acknowledged that people of faith have no monopoly of virtue - Queen Elizabeth II
by eurogreen on Wed Feb 8th, 2023 at 09:24:14 AM EST
Here you go:
by Tom2 on Fri Feb 10th, 2023 at 05:33:47 PM EST
[ Parent ]
by Frank Schnittger (mail Frankschnittger at hot male dotty communists) on Wed Feb 8th, 2023 at 01:19:52 PM EST
What if the price to pay for the 1 percent to carry its medical data safely is the interdiction of open source software, as advocated by the authors of the AIA draft (artificial intelligence act) and the stakeholders of the gofair consortium (registered as an association in Belgium!)
by Oosterbeek on Sun Feb 12th, 2023 at 04:28:27 PM EST
[ Parent ]
"I would welcome the observations and experiences of other posters here to provide a more up to date picture of the current state of play."

How familiar. In the NL currently, you can move from a GP to another and wait 6 months to see your file transferred; today my physio saw on his system the insurance I had for 2021 (without physio option) but not the one I had for 2022 when he was wondering why the payments were rejected. Worse than that, as I experienced recently, the hospital tells you they cannot send you the "range values" of the blood analyses for which they have sent you the results (and same for the GP practice). The automatisation of the comparison of the blood analyses, to give just one example, does not work properly and won't work since admittedly they explain that the different labs use different values!
I once needed to visit the hospital on a Sunday for an emergency (shortness of breath and fainting) and I was not allowed to get the "authorization to go to the emergencies" for the nearby hospital (where I had been registered just 2 years before!) and had to go to a private clinic much further away (with a bus per hour as sole public transportation). This was due to the fact that my GP was registered in another city 20 km away (but in the same province!).
What you describe here "Overnight they conducted a large number of tests which hugely impressed my medical relatives who worked in one of the largest hospitals in Ireland. Those tests would only have been performed 9-5.00 on the following day in Ireland" corresponds to the difference between France and NL. However, France has no "centralized" medical file so they tend to make superfluous exams that have been done shortly before already.
I think we are witnessing a "controlled demolition". GP practices in NL have been forced to group several practicians, who are then asked to work on several places. As a result and post covid, a silent protest to the chaos that is progressively setting in (encouraging the fact we never see the same practician), there is shortages of staff and sick leaves in every practice resulting in very long delays to get an appointment, the value of which then gets lost from the additional time to wait for the hospital examinations (I have to wait 15 days between a CT scan of the heart and the phone appointment with the doc who told me I had a hiatal hernia!).
"and decided to attend a physiotherapist who was also an osteopath"
I have had the hernia pain irradiating into my shoulder for 6 months, but nobody though about checking for a hernia, and it is just by chance that the ct scanner revealed it because it is small. Nevertheless, visiting the physio helped me a lot but unfortunately, I had not renewed the "physio option" because I did not want to pay an extra 180e for the year. Now I am not allowed to take it because you can change the options only before december! Too bad when the winter humidity strikes you with a sciatic early January...
On top of that, after seeing a physio last December and now twice an ostheo who was more serious, but paying fully (twice 70 euros) I realized that they do not correspond with the GP. I have asked for a report of what he has diagnosed of the hyperventilation and compression of my organs but am still waiting and he does not seem at all under pressure to do it.
"the data gathered in investigating ailments is yours, and should travel with you wherever you might have a medical episode and need treatment"
Is the controlled demolition meant to bring exactly that? There seems to be a lobby ready for the "stewardship of data" (google it)
The fact they have appropriated concepts once used for open source publishing (but are now advocating a restriction in the use of open source software, while obliging researchers to publish everything open source, meaning they are actually doing machine learning without being asked for their "informed consent" makes me extremely worried).

by Tom2 on Fri Feb 10th, 2023 at 05:32:57 PM EST
Since these "grid connections" are apparently going on at a very high speed lately, when are we going to have a public debate about this:


by Tom2 on Fri Feb 10th, 2023 at 05:35:37 PM EST
by Oui (Oui) on Fri Feb 10th, 2023 at 06:53:12 PM EST
[ Parent ]
Maybe Cat could decipher this "the proposal complements existing Union law on non-discrimination with specific requirements that aim to minimise the risk of algorithmic discrimination, in particular in relation to the design and the quality of data sets used for the development of AI systems complemented with obligations for testing, risk management, documentation and human oversight throughout the AI systems' lifecycle."

Does that alludes to the training of bots to target specific genders and 'races' as i ve seen in some job ads for linguists recently or it is only tech?
You bet the EMP have a bunch of lobbyists ready to explain them the drafts in all transparency.

by Oosterbeek on Fri Feb 10th, 2023 at 09:36:13 PM EST
[ Parent ]
by Cat on Fri Feb 10th, 2023 at 10:29:37 PM EST
[ Parent ]
by Cat on Fri Feb 10th, 2023 at 10:31:51 PM EST
[ Parent ]

(L) Mac OS 9, (R) Win OS 8
by Cat on Wed Feb 15th, 2023 at 11:32:53 AM EST
[ Parent ]
Add to this picture the "intra-European mobility" imposed to researchers, which in humanities means 2 years job maximum, and the obligation not to have lived in the country where you apply for the 3 years before the call.
Sustainable to who?
by Tom2 on Fri Feb 10th, 2023 at 05:44:09 PM EST
How come the EU has made acceptable what was NOT the rule in the German and French system, namely that the rich are not asked to pay more than the poor? Why do the British and the Dutch or the German enjoy in Spain what they would wait ages to get in their own country, and for free while this would not necessarily be the case in their own country?
https:/www.lemonde.fr/international/article/2023/02/12/manifestation-monstre-a-madrid-pour-la-defen se-de-l-hopital-public_6161547_3210.html


by Tom2 on Sun Feb 12th, 2023 at 06:14:19 PM EST
The European Health insurance card entitles you to free emergency healthcare at a public hospital anywhere in Europe. Is this a bad thing?

Anything more than that, and you have to become a resident taxpayer in Spain or go private. Is this wrong?

Spain benefits from having more round the year tourist spend and tax income, and a thriving private dental and medical services market.

Other countries benefit from having the pressure taken off their underfunded public facilities.

Is this not what the EU is supposed to be about?

Index of Frank's Diaries

by Frank Schnittger (mail Frankschnittger at hot male dotty communists) on Mon Feb 13th, 2023 at 11:33:54 AM EST
[ Parent ]
... that is to say, except in the country where you live, when it comes to the NL, because the NL definition of emergency (which is the only reason that could allow you to go to the hospital on a weekend) is basically that there must be blood.
When the definition of "emergency" differs from one country to another, how sustainable is it supposed to be?
by Tom2 on Mon Feb 13th, 2023 at 08:08:38 PM EST
[ Parent ]
You're making a powerful argument for increased EU integration, and you are right, EU competencies in the health field are extremely weak. The EU interferes in the justice and education fields to enforce minimum standards, and it should do so for health provision too.

It is rightly acknowledged that people of faith have no monopoly of virtue - Queen Elizabeth II
by eurogreen on Tue Feb 14th, 2023 at 09:56:06 AM EST
[ Parent ]
Am I making a powerful argument for increased EU integration? What do the voters of the EU countries think about it?
by Tom2 on Tue Feb 14th, 2023 at 12:36:51 PM EST
[ Parent ]
Or perhaps you're making a powerful argument for not living in the Netherlands. (In France, you can sit in the emergency room for as long as you like, they will not turn you away. But you may die waiting.)

Perhaps you're making an argument for excluding non-NL citizens from NL emergency rooms? It's hard to tell.

It is rightly acknowledged that people of faith have no monopoly of virtue - Queen Elizabeth II

by eurogreen on Tue Feb 14th, 2023 at 04:07:15 PM EST
[ Parent ]
Perhaps increased expenditure on Emergency healthcare centres? It doesn't seem to me to be a bad use of taxpayer funds...

Index of Frank's Diaries
by Frank Schnittger (mail Frankschnittger at hot male dotty communists) on Tue Feb 14th, 2023 at 05:00:37 PM EST
[ Parent ]
Minimum standard in justice? Have you try to find a lawyer to defend an intellectual property case recently?
by Tom2 on Tue Feb 14th, 2023 at 12:37:28 PM EST
[ Parent ]
No, that's the invisible hand of the market at work. Or did you expect legal aid?

It is rightly acknowledged that people of faith have no monopoly of virtue - Queen Elizabeth II
by eurogreen on Tue Feb 14th, 2023 at 04:08:45 PM EST
[ Parent ]
Maybe the Europeists will have to explain voters why their idea of EU integration has to go through a full implementation of the democratically rejected Transatlantic Trade Treaty?
by Oosterbeek on Wed Feb 15th, 2023 at 04:12:36 AM EST
[ Parent ]
So if you were suffering a severe stroke (as I was) I could not have gone to a public hospital in NL?

The moment I walked in I was triaged and had a doctor and two nurses working on me trying to get my blood pressure down from over 200.

That is not the sort of thing that can wait unti the following Monday...

Index of Frank's Diaries

by Frank Schnittger (mail Frankschnittger at hot male dotty communists) on Tue Feb 14th, 2023 at 01:12:01 PM EST
[ Parent ]
You would have had to call a triage platform and.........then only your luck decides.
by Oosterbeek on Wed Feb 15th, 2023 at 08:13:47 AM EST
[ Parent ]
European Health Insurance Card,
Important (disclaimer bullet points); and
"Explanatory notes on necessary care (2011)"
by Cat on Tue Feb 14th, 2023 at 05:30:40 PM EST
[ Parent ]
How come within one and the same country, NL, two practitioners that are legally recognized and reimbursed by my mandatory private insurance are not obliged to communicate their results about my treatment (as the GP and the physio) is beyond me. If i had more money i would try in other EU countries and pretend it is an emergency (in israel once a GP, not a hospital mind you, gave me directly the french healthcare form to fill for when i would return).

But researchers are due to have an ORCID...

by Oosterbeek on Wed Feb 15th, 2023 at 08:12:43 AM EST
[ Parent ]
The best way to understand the EU is to read this article: it is illegal or in a grey zone? Sell certifications over it...
https:/www.dutchnews.nl/news/2023/02/stamp-of-approval-row-about-quality-certificate-for-coffeeshop s
by Tom2 on Wed Feb 15th, 2023 at 04:22:58 PM EST
Cannabis sellers are developing a national quality certification for coffee shops to improve their relationship with local government and the law.

Are you suggesting that the EU should be doing the certification?

It is rightly acknowledged that people of faith have no monopoly of virtue - Queen Elizabeth II

by eurogreen on Wed Feb 15th, 2023 at 04:39:51 PM EST
[ Parent ]
They are already doing all sort of laws and certifications which are entirely anti-constitutional, which makes me think of the end of the article about coffee shops certification.
"But some are less enthusiastic. Simone van Breda, chair of another trade union the BCD, said it had already spent two years developing its own quality standards, in collaboration with the Dutch government. Others pointed out that there wasn't much point to a certification of coffee shops if cannabis itself was not properly legal and regulated. `In the ideal situation, you have both certified cannabis and certified coffee shops,' said BCD contributor Hester Kooistra. August van Loor, director of the Adviesburo Drugs in Amsterdam, said that since cannabis is not fully legal in the Netherlands, a quality mark would `raise more questions than it solves...and double the schizophrenia.'"

 Remember, there is no law
"Coffee shops, which sell cannabis for on and off-site consumption, currently operate in a legal grey area and buy from criminals, since commercial growing is illegal"

by Tom2 on Wed Feb 15th, 2023 at 05:57:48 PM EST
[ Parent ]
Why on earth would the EU want to become involved in something that is illegal in most of its member states?

The European Medicines Agency could become involved if it ever decided to approve some cannabis products for medicinal use. But recreational use? The EU doe not regulated the sale of Alcohol.

Index of Frank's Diaries

by Frank Schnittger (mail Frankschnittger at hot male dotty communists) on Wed Feb 15th, 2023 at 07:18:59 PM EST
[ Parent ]

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