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Digitisation & Integration of Healthcare Records, why do we lag so far behind?

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  • 30-01-2023 9:03pm
    #1


    How did we end up being back of the class when it comes to an integrated healthcare records system in Ireland? How did we fail to implement APIs to interlink hospital and doctor records? 

    In 2017 I was once nearly a victim of lack of such a system. During an admission to a public hospital for emergency abdominal surgery it was noted I had a lesion at the base of my lung that to the respiratory consultant looked like cancer. It wasn’t, but was the calcified remains of a subdiaphragmatic abscess caused by a previous bowel leakage, as noted at a private hospital where I had undergone surgery. The public hospital had already pencilled me in for urgent removal of a lung lobe as the lesion appeared identical to mesothelioma. In order to save myself from the fate of unnecessary lung removal I needed to drive over to the private hospital and sign a form to release my medical records. I’m sure this type of thing happens to others day in day out, but it felt unreal at the time and caused a vast amount of stress. 

    What exactly stopped us from getting to where consultants, GPs, patients and other healthcare professionals are unable to communicate through a common portal? The tech has been here long ago. For anyone with any familiarity at all with Linux directory and file permissions, this sort of thing could be applied to healthcare record permissions in the form of Healthcare

    Professional Groups, and Patient Group. Eg Pharmacy Group would have permissions to view key information & current treatments, and to record medicines dispensed. 

    Yes it would be complicated to set up, but there are already APIs which could be utilised and others which could be tailored. Security & as safe as possible back-ups would be vital considerations, with basic medical professional ledgers kept as to basic updates. Eg “Rosemary Murphy: underwent spine MRI 30/11/2021 no lesion noted”, so there would be a very small paper trail in the event of a systems failure. 

    A lot of person-power would be needed in the digitisation process, a lot of trusted persons sitting at screens for a couple of years to even begin to catch up. I worked on digitisation projects where a lot of staff working 7 days, on overtime, did an amazingly fast and efficient job of reinstating lost data after a fire destroyed the server which was not remotely backed up. It would take the political will and investment. I believe the new Children’s Hospital will be paperless. No reason why everywhere should not be, except finding enough trusted people for data handling would be a challenge, after all we are dealing with very sensitive personal medical records. 



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Comments



  • From the 1960s this guy developed an IT system for Aer Lingus operations, first program was in FORTRAN created by John Byrne of TCD who happened to be a relative of mine. David Kennedy created an Aer Lingus subsidiary, Cara, which sold software to other aviation entities.

    We need people like him to analyse and implement what is needed in our healthcare systems.



  • Registered Users Posts: 11,774 ✭✭✭✭BattleCorp


    It's being looked at now but it wasn't a priority for years. Lack of joined up thinking. The HSE is run on spreadsheets which is akin to working on an abacus nowadays.



  • Registered Users Posts: 1,697 ✭✭✭nothing


    Did a stint as a student at a hospital (back when they used take on secondary students for summers), the computer based system was awful, and learned that basically every individual hospital had paid for/developed their own system and there was pretty much no compatability from one hospital to another. That blew my mind 20 years ago at the lack of foresight, the waste of resources, and sheer idiocy. I suspect nothing has changed.



  • Registered Users Posts: 27,161 ✭✭✭✭GreeBo


    Its kinda linked to the national identity stuff.

    To properly implement such a system you first need a unique way to identify each person.

    Then all systems need to be computerised and use this unique identifier.

    Then the systems need to be linked.

    But people start to talk about big brother and GDPR nonsense.


    Its really easy to hide stuff when everything is unconnected and on paper as it takes manual effort to find things, but once things are connected you can throw hardware at it and it will spit out things that warrant further investigation. Certain people dont like that.



  • Moderators, Recreation & Hobbies Moderators, Social & Fun Moderators, Society & Culture Moderators Posts: 6,906 Mod ✭✭✭✭shesty


    There appears to be some reluctance to allow attempts to introduce digital records to get up and running.

    Given that some hospitals have managed to implement digital records, I wonder is it certain individuals in certain hospitals causing the problems.If so they should really be called out for it, or penalised in some way.Blocking simple progress like this, which our system badly needs and is in everyone's interests for the most part, is not excusable.



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  • It’s down right dangerous in today’s context of hi tech medicine not to have it backed-up by an integrated hi tech system. Yes, I imagine certain people want things to be relatively in searchable, and certainly not by another doctor in another hospital. But a permissions system would assist there, however I don’t imagine a medical consultant would like his/her access being controlled by a sys admin typing sudo su 🤣.



  • Registered Users Posts: 68,691 ✭✭✭✭L1011


    Hospitals 'owned' by many disparate bodies between voluntary boards, religious orders and various bits of the HSE; GPs and pharmacies all private contractors and the GMS contract being absolutely antique; regionalised IT budgets in the HSE prevent national planning (and yet the early NEHB and SEHB drives to digitise ahead of the rest of the country got centrally sat on after the HSE was formed); rudderless management running to fix the latest scandal and either unable, unwilling or not allowed to fix structural issues; the surreal situation that Healthlink (the messaging and referral interlink system) was formerly a private company.

    Pick one. Or pick all, they're all valid reasons why stuff has barely advanced in 25 years compared to what the NEHB could do then.



  • Registered Users Posts: 68,691 ✭✭✭✭L1011


    FORTRAN was not created at Trinity if that was what you were truing to suggest?

    Aer Lingus are suffering hugely by still using the now comically antiquated ASTRAL system from the 1960s, so you really picked a terrible example here.

    Post edited by Boards.ie: Paul on


  • Registered Users Posts: 82,509 ✭✭✭✭Overheal


    Aer Lingus doesn't run a hospital and they barely run an airline. I can think of better ways to operate an emergency medical facility


    Post edited by Boards.ie: Paul on




  • I am giving an example from the pioneering 1960s, not the current incarnation of Aer Lingus. If one well able guy could accomplish such a thing back then surely a person of similar calibre could head a team that could knit together health service informatics. The ground has already been well prepared by the pioneers. More a question of politics these days.



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  • Where did I say FORTRAN was created at TCD? Their article tells of how it was used in the creating of scripts for implementing of early Aer Lingus algorithms.



  • Registered Users Posts: 68,691 ✭✭✭✭L1011


    the words "FORTRAN created by" rather suggested that.

    Someone who designed a system in the 60s is exceedingly unlikely to be in any state to even consult on a design for something in the modern era - they likely retired 20+ years ago.

    And their modern equivalents will already have been involved in the various reports over the year - its the managements refusal to fund and implement that is the issue; not the skills available.

    Post edited by Boards.ie: Paul on




  • For goodness sake my point is being missed… of course we can’t have a 1960s system to operate health records. What I’m getting these times is a lot of hand wringing and an “it can’t be done now” take. We build on the pioneers’ work, we have people as talented, but we don’t yet have the will to forge ahead.





  • I never suggested that the original 100 year olds, if they are still alive, should be in charge of it all now 🙄





  • I worked in the public libraries services, which were individually operated by the various local authorities. Each system was a different package. Eventually we integrated all the different systems under a package called Sierra from a California based company, with no real-time support given the time difference. We didn’t quite like the system for quite some time, there were huge hiccups, but eventually the staff got the system to work together as one. It was a rather painful process but we got there and now the system is one and can be accessed from a couple of options including the API BorrowBox. Now we are talking customer, items and transaction database, not healthcare. But with a similar effort the disparate healthcare systems (or non systems) could be integrated.



  • Registered Users Posts: 4,957 ✭✭✭kirk.


    Is hospital systems rocket science ?

    I wouldn't have thought so



  • Registered Users Posts: 3,440 ✭✭✭macraignil


    Not sure who we are being compared with to say we are lagging behind on digitisation but I have heard that the logic for keeping printed patient charts in the past was that the printed version was seen as a backup store of information on a patient that would still be usable in an emergency situation when computer based systems are not accessible. When I was told this I had the image of a hospital working in a power cut but it's not that long ago that there was an encryption virus introduced to the HSE computer systems and going into work I was faced with a machine on the desk where I work with a sign posted on it from the hospital IT team saying that in no circumstances were any of the hospital computers to be switched on or used. All the computers were later replaced and I imagine all the old machines became scrap as there could be no guarantee that the old PCs did not keep some of the damaging software they were infected with.

    I can see improvements have been made with patient information being accessible online when proper access permissions are granted but there is often information in printed charts that has never been put on a digital system and some that were on IT systems that are no longer active and printouts from them in the patient's paper chart is all that is left to say a particular test for example was carried out at some point in the past. At times there can be some of the records from other hospitals for that patient if they had been requested but it would be unusual for this work to be taken on and there simply is not the spare capacity in hospital administration staff to do this for anything more than a small portion of patients. Its only a few weeks ago I heard some radio presenter ranting about how the health service needed more doctors and nurses and less administration staff. I'm not sure how they came to get this information that the health service was so weighted against doctors and nurses but they seemd fairly confident with their claims that more expenditure on administration in the health service was not what their listeners wanted to hear.

    To improve the integration and digitisation of health records would require a lot of work and employing lots of accurate diligent workers to insure no mistakes were made in getting the information on every health service patient records from multiple sources 100% correct. It would also require a system that is completely secure from unwanted external access to confidential records and a durability in the system that would mean all the work would not need to be repeated again when it was realised that a more up to date IT system should be employed. There are already IT systems used in patient administration and sharing of information on patients but this is very different from having a digital only record for patients. Developing this concept could see a large portion of the health sevice budget going to build a system that might end up failing and the risk of getting such a system wrong are huge for anyone who decided to implement it. I could go in to further detail on some of the complications that could arise particularly for more complex patients and ones who have a longer and more detailed medical history but to keep my post to a reasonable lenght I would just like to say that I would be very concerned about patient health care records going completely digital and think there are potentially very serious consequences if this was not handled well.



  • Registered Users Posts: 4,957 ✭✭✭kirk.


    What's the norm elsewhere



  • Registered Users Posts: 28,939 ✭✭✭✭AndrewJRenko


    Just on the off chance that anyone is actually interested in the scope and complexity of the challenges facing the HSE around digitalisation, this would be a good starting point.


    The idea that Linux directory and file permissions would form some kind of basis for Electronic Health Records is crass in the extreme.

    It’s a bit like saying bricks are the solution to our homelessness crisis.



  • Registered Users Posts: 2,636 ✭✭✭Nermal


    The mix of public & private we have is the perfect recipie for preventing things like this.

    With more public ownership standards and interfaces could be mandated, and institutions that don't bother doing anything could be threatened or even defunded.

    With more private ownership you'd see incompatible networks developing but the pace of change would be much, much faster.

    We've ended up with the worst aspects of both: there's no external or internal incentive to change at all.



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  • Registered Users Posts: 4,616 ✭✭✭maninasia


    Public and private insututions can be integrated much easier under a universal insurance healthcare system, there every individual has a unique health insurance chipped card which is used to access the data from hospital/GPs side when you visit and plug into payment and hospital reservation systems.

    All the hospitals and GPs will be forced to conform to the universal health insurance standards otherwise they won't get paid (public or private) as universal insurance is patient centric, the money follows the individual patient who becomes more like a customer. Countries such as Taiwan have had such a system for over 20 years.


    Make it about access to patient fees and they will confirm quickly.



  • Posts: 0 [Deleted User]


    In the off chance we actually manage to create such a complex system, the data would inevitably be breached. How would you feel about everyone knowing your health status? I frankly don't care but it is something to consider.



  • Registered Users Posts: 7,037 ✭✭✭timmyntc


    If things like banking can be done totally digitally and work, surely medical records can.

    Again, this isnt rocket science.

    You could have a centralised highly regulated point of storage, and individual hospitals/GP practices can make requests for records from that, with their own credentials. They would not be kept in sync or stored locally, only request a patients records as you need them. I'm sure there are ways to idiot proof the whole thing also to protect against end-user ransomware, such as 2FA for any requesters.

    This is a very solvable problem, that has been solved in numerous ways all over the world. There is no excuse for reliance totally on paper records in this day and age.



  • Registered Users Posts: 7,037 ✭✭✭timmyntc


    Revenue have a totally digital record of your income, taxes paid, tax credits, employment history, debts owed, etc etc.

    Yet they have no issue with this either. There really is no excuse for not having the healthcare system digitised



  • Registered Users Posts: 3,440 ✭✭✭macraignil


    "This is a very solvable problem, that has been solved in numerous ways all over the world. There is no excuse for reliance totally on paper records in this day and age."

    As someone working in a HSE hospital there is not total reliance on paper records. There are IT systems with patient information available for a number of years and these systems can be accessed through the internet. The paper records do often contain additional information that is not available on the online IT systems but this is often older and less relevant to the current patient treatment.



  • Registered Users Posts: 2,364 ✭✭✭micosoft


    It's not rocket science, it's much much harder. Both Microsoft and Google have written of over $10 billion between the two of them attempting to solve the patient record problem. Microsoft is closing its HealthVault patient-records service on November 20 | ZDNET

    One of the challenges in this country is folk assuming things are easy/cheap/quick in domains they know nothing about but happy to explain why their own relatively simple job is super complex.



  • Registered Users Posts: 28,939 ✭✭✭✭AndrewJRenko


    Are we back in 2012? FG came to power in 2011, leading a Government with a strong majority, with a clear policy for Universal Health Insurance as one of the pillars of their campaign. Their Labour partners were broadly supportive. When the rubber hit the road, they couldn’t make it work. The Irish market is too small to support competing UHI insurers.

    Taiwan has 23 million people. We have 5 million. It’s a big difference.



  • Registered Users Posts: 28,939 ✭✭✭✭AndrewJRenko


    On the broader question, the reason why we don’t have full digitisation of health records is because we haven’t resourced and paid for this. We only started putting any serious resources into this about six or eight years ago. The existing team have made very considerable progress, on things like electronic prescriptions, electronic referrals, electronic health records (EHRs) across maternity hospitals and more, as detailed on the site linked above. They have nothing near enough staff, and the staff that they have are frequently poached by private sector consultancies, and then sold back to the HSE at treble the daily cost.

    They’ve also been slightly distracted for a couple of years with Covid, having delivered key systems in record times, including the vaccination booking systems and the online Covid cert. The Covid app developed by the HSE was picked up by several other countries too.

    If you want the best of digital systems, you have to pay for them.



  • Registered Users Posts: 5,654 ✭✭✭Charles Babbage


    The poster made no suggestion about FORTRAN being created at TCD, only that someone in TCD used it.

    Aer Lingus may have fallen behind in the 60 years since, but that in no way devalues the usefulness of their early work.

    The lack of a computer record is shocking. Across Europe there surely are examples of systems that can be modified for Irish needs, issues likes different ownership of hospitals etc exist elsewhere. There may be isolated progress, but this needs to be fully integrated.



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  • Registered Users Posts: 6,708 ✭✭✭zg3409


    Chronic underfunding is a big issue. Also all regional health boards have old legacy incompatible systems. We are also a relatively small country with separate procurement systems.

    The technology is only a tiny part of the problem, there is various regional/local agreements on pay, structures, systems, procedures, processes, paper based, undocumented etc.

    Then add in unions that want extra money for everything. Typically Ireland has a bad track record at major projects even "straight forward " in comparison to health things like public pay systems.

    There is also pushback on data security concerns, paper records at say your local doctor are unlikely to be leaked on a national scale unlike what happens in ransomware cases. In the USA it's common for entire databases of all patients history to be leaked or even deliberately shared with health insurance companies for risk assessing patients.

    If everything was in one database today there might be some unintended consequences such as health insurances micro profiling every citizen and adjusting premiums or denying cover or paying out claims. In the USA it's the wild west.

    We should try to have at least a way of sharing documents and scans electronically, too many taxis being sent with files between hospitals.



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