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

[Deleted User]

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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[Deleted User]

https://www.boards.ie/discussion/comment/120181407#Comment_120181407

Can you identify any examples of unions wanting extra money for anything related to digitisation in healthcare?

micosoft

https://www.boards.ie/discussion/comment/120180667#Comment_120180667

Indeed. A lot of "techie" answers that are very low level "install software, ???, Success".

The challenge we have here is a massive transformation programme where the bulk of the transformation (Costs/Effort) is in the way people work and the elimination of certain roles and creation of new roles with radically different skillsets (i.e. not a transfer or reallocation of people) all while keeping a struggling health system going. It's 10% technology problem 90% people.

This is really hard and the biggest challenge is a highly unionised workforce along with the exceptional power of the consultants along with a mandarin class of administrators all conspiring to resist change because it's not in the personal interests of a significant enough minority of healthcare workers to accept change. Unfortunately the solution will require significant industrial unrest to "break apart" the HSE so it can be reassembled as an effective organisation.

micosoft

https://www.boards.ie/discussion/comment/120181042#Comment_120181042

The head of Barclays Bank said Banks were IT companies with a banking licence. Many international banks spent billions consistently over decades to get where they are with much simpler employee relations and a much simpler dataset. Not a great example at all.

Geuze

https://www.boards.ie/discussion/comment/120181424#Comment_120181424

Here is an example from the LA:

https://www.rte.ie/news/ireland/2023/0129/1352533-wrc-council-inspector/

[Deleted User]

https://www.boards.ie/discussion/comment/120181802#Comment_120181802

1) Not in healthcare

2) Not a “union wanting money” but one individual employee wanting money.

3) She lost her case.

Clutching at straws?

GreeBo

https://www.boards.ie/discussion/comment/120181042#Comment_120181042

Banking is orders of magnitude a simpler space to work in than healthcare.

[Deleted User]

https://www.boards.ie/discussion/comment/120181802#Comment_120181802

She would not have wanted to have worked in my place.

[Deleted User]

To have everything on the one single database may not be the answer at all, it would require a hell of a lot more than that. But the set of healthcare databases should be queryable by means of permissions (I used the simple Linux permissions purely as an example of how a more complex API could potentially be developed) so that at least, eg, the public hospital could have got access to my scan report that time from the private hospital and not start scheduling me for urgent lung surgery. They depended on my driving over to that hospital to initiate the process. It was clumsy, stressful and unnecessary.

In Ireland we have a deeply ingrained “can’t do” attitude, which is at the root of it all. We do have to look out for unintended consequences, but these are not insurmountable. In such a system, patients should have the ability to grant or deny certain permissions in the first place.

NewClareman

https://www.boards.ie/discussion/comment/120181255#Comment_120181255

I am not convinced that finance is the main obstacle to implementing this more quickly. As an example there are many roles dependent on the existing paper based records system. Targeting areas such as these, where substantial cost savings should be possible, should help partially self finance much of the implementation.

Im also not convinced that agreement has been reached to implement a standardised approach across all public hospitals that would allow packaged, off the shelf, solutions be used. I suspect that there are multiple vendors with such systems that could deploy them cost efficiently. Maybe I'm wrong but my experience in other industries was that managers held on to their unique processes, with bespoke supporting systems, for dear life.

Having said all this, I'm really impressed with all the work done to date, particularly the published architecture. I hope it can be progressed more expeditiously and help transform us into a modern health system.

[Deleted User]

When the library authorities were starting to integrate it started slowly enough. It began with the small step of making all catalogued library materials throughout the country at least visible on a common portal. It was at least somewhat helpful in that you could see what was available and where it was located. A couple of years later we had a fully integrated, fully interactive system, due in no small measure by tremendous efforts of the staff. But there again information science was at the core of our operations.

[Deleted User]

https://digital-strategy.ec.europa.eu/en/policies/electronic-health-records

EU wide proposal to integrate healthcare records across member states. Already happening across Finland and Estonia.

Calahonda52

Post 31 on the money, especially the US problem where whole cohorts of folk are now being denied insurance due to access to medical records.

as for the union issue

see this

https://www.google.com/url?q=https://www.rte.ie/news/ireland/2023/0129/1352533-wrc-council-inspector/&source=gmail&ust=1675193623802000&usg=AOvVaw2WDUchn_YILMnyVxKesz-A

A Fórsa representative told the WRC hearing that the employer "showed no duty of care to the worker" and highlighted that "she should have been referred to occupational health as a result of the stress caused to her by these proposed changes".

I was in a public service location lately and there were 3 staff knitting. They refused to take on alternative work at the same desk unless they got extra pay: on full pay and are running a website where the output is being sold.

NewClareman

https://www.boards.ie/discussion/comment/120181492#Comment_120181492

Yeah, I hadn't seen your response when I replied above.

A while ago, now, I was deeply involved in an IT modernisation program, which was to drive organisational change. Similar issues arose, but not to anything like the scale of the HSE. Every manager had unique processes that were essential to business success. There were business analysts and process specialists coming out our ears, all on an expensive day rate. Their job was to document and specify these essential processes, for subsequent implementation.

It was never completed, despite many millions being spent on vendors and consultants. Instead, stripped down simplified processes were developed, that could be supported by off the shelf systems. I don't think there's the political appetite in government to support such an approach in the HSE. As you say, too many vested interests that they are afraid to tackle. It's far easier to throw yet more money to give the illusion of real progress.

macraignil

https://www.boards.ie/discussion/comment/120182105#Comment_120182105

"information science was at the core of our operations."

I'm taking it from this statement that you were part of the efforts to integrate library authorities so well done with the advances you have made there. Your first post mentions being penciled in for surgery due to the appearance of a lesion on a scan and that going to get your records from a private hospital that had additional information saved you from undergoing this surgery to remove a lung. I am sorry you had this stressful experience but it is very common particularly in the case of time sensitive interventions for procedures to be booked well in advance due to waiting lists even if there was only a chance that this intervention was to go ahead. I'm not working in respiratory health but I would be very surprised to see someone getting a lung removed based on one image and in most similar circumstances I have seen recorded a biopsy is taken initially to confirm with a histopathologist that the consultant's suspicion based on the image was correct. There are also patient paper records showing public hospital administration contacting other hospitals to get patient treatment details sent onto them in case they were relevant to future treatment but I don't know why this was left to you to do yourself in your own medical experience that you have highlighted.

Just to help me compare your success with what is required to be done with the health service, how many active library users are there in the country and how many library book listings needed to be integrated?

NewClareman

https://www.boards.ie/discussion/comment/120182428#Comment_120182428

Maybe I'm missing something, but I don't see the relevance of the number of users as an indicator of complexity. Yes, if the idea is to integrate existing systems, that would be a nightmare. However, I would have thought that a solution could be developed for one class of function, say radiology, proved; and then rolled out to similar functions countrywide.

Going further, I cannot imagine that there is anything so unique about Irish public healthcare that requires entirely new IT solutions. I'm sure that there are vendors that could provide substantially off the shelf solutions, that have already been proven elsewhere. Some may even be prepared to implement for free, if given an agreed percentage of cost savings. It then comes down to the political will to impose change, where it cannot otherwise be agreed.

timmyntc

https://www.boards.ie/discussion/comment/120181871#Comment_120181871

What extra difficulty does a shared database of patient records pose for healthcare workers?

They already keep patient records, in many cases they even have their own digitised record systems. The change is to have a centralised repository of patient records where medical practitioners can quickly & securely request or edit said records.

And the idea that banking is simpler than healthcare? Nonsense. In banking IT systems, there are far more actors in play, far more data by volume & frequency of updates, and a far greater consequences if something is cocked up.

[Deleted User]

https://www.boards.ie/discussion/comment/120182428#Comment_120182428

My situation was complex, but to explain it better I underwent a full colectomy and follow up surgeries & procedures to treat complications at the private hospital. This was following decades of ulcerative colitis A year later I developed a sudden strangulation of a parastomal hernia, taken by ambulance to public hospital where I underwent surgery. After discharge from hospital I arrived home to a letter in my porch advising me to attendance the hospital’s early lung cancer clinic some days later. I was stunned as I had no respiratory symptoms.

Once there the respiratory consultant had a nurse in with her, her hand on my should as she explained there was no easy way to do the pleural biopsy bar opening up part of my chest, which may be quickly followed up by lung removal if cancer were found. She said lesion looked identical to mesothelioma and only hope was to gave this procedure extremely quickly, and that I was pencilled in next week for it, date given to be there and then. She asked me were there any possible records of previous scans/reports anywhere else to check against before proceeding further, and that tone was of the essence. I ended up driving over to the fairly nearby private hospital to ask for release of documents, which felt bizarre at the time. An ability to directly access my record would have saved the whole situation, starting with the urgent call to the early cancer clinic.

Re library records I would have to go back and research that, I am now retired from service, but there were hundreds of thousands of catalogued materials, and of course thousands of users. There was a huge transaction rate.

The integration was overseen by a management who didn’t actually use the system and had limited IT knowledge. The actual implementation was mostly done was trained Grade 3 staff who were working from notes and making non-stop bug reports. The bug reports were largely dealt with by Grade 4 staff and the overall excellent Sys Admin Librarian who was Grade 6, but most Grade 6 & 7 had difficulty even turning on their own computers. Spreadsheet creation etc was always delegated to lower grades who had been sent for training to the Institute of Public Administration. One particularly talented person of entry rank, who had done a mammoth share of patching the system, was subsequently by-passed for promotion.

[Deleted User]

https://www.askaboutireland.ie/libraries/public-libraries/fast-facts-and-figures/

Some Public Libraries Ireland stats

[Deleted User]

https://www.borrowbox.com/

The API which is used to access library service sponsored eBooks for free.

https://www.librariesireland.ie/

The portal for the now integrated library services in Ireland.

The process of integration was very stressful, especially when we first went live on 2nd January in the noughties with a system which was originally not fit for purpose until the staff on the ground who worked various shifts covering 9am-8.15pm and Saturdays, made it so. Senior management worked 9-5, Mon-Fri and were very far removed from the systems as it progressed. A willing staff can make it all come together.

macraignil

https://www.boards.ie/discussion/comment/120182643#Comment_120182643

With increased numbers there will be increased incidence of more difficult to integrate cases with some patients having multiple volumes of printed chart medical records and these are often the ones with the more difficult to deal with conditions. There are already IT systems accessible remotely for different classes of function but only some of them are cross linked between hospitals. With one that I am familiar with that gives lab results to a hospital group you have numbers of cases that are more complex with some results not showing up on a simple search by patient ID number and surname as they have more than one ID number assigned to them from tests done at different sites or even the same site after their number was changed for hospital administrative changes that I have never got fully explained to me. It is possible to see this in some patient printed charts where they will have one number in their older records but a different one in more recent records. Its my view that if you are dealing with a bigger number of records then the task does get more complex simply because there are more of the irregular cases that take extra work to figure out how to integrate correctly.

macraignil

https://www.boards.ie/discussion/comment/120182956#Comment_120182956

Thanks for making it clearer to me what your experience was with the release of records and it does seem that because of the time frame involved the collection of your records from the private hospital was a good idea as it could have taken more time for the hospital administrative staff themselves to exchange the relevant details. From what I have seen in hospital records there are difficulties caused by the way records are segmented between different hospitals and other organisations but I can't see an easy way to get around this without serious investment and although it could save money in the future I can't see how it would be done without major investment in the record integration process now (in a time when the health care budget is already stretched by other considerations like the increased number of users due to population growth, population aging and increased volumes of records due to more variety in tests and treatments being available). There are only a limited portion of health care staff employed in administration and from the media coverage I have heard recently, any investment in this part of the health care service does not seem very popular.

[Deleted User]

https://www.boards.ie/discussion/comment/120183028#Comment_120183028

There must be a big legacy of bad record keeping but duplicated entries can be amalgamated with due diligence. It would necessitate employing a slew of vetted contract workers to initiate the task.

[Deleted User]

I always keep my own medical record accessible from my phone, including my uploaded past medical taken from all previous admissions a & GP, plus my own summary of conditions which include some slightly difficult to pronounce stuff like Takotsubo Cardiomyopathy, current medications etc.

Markus Antonius

They won't bring it in because all the old dinosaurs who want to control everyone would immediately become outclassed by new graduates.

jmayo

https://www.boards.ie/discussion/comment/120180785#Comment_120180785

Ehh private institutions already have some systems that doctors can access, it is publicly owned ones be they pure HSE or voluntary hospitals that is the major issue.

People forget the HSE grew out of the health boards where there were no end goals of streamlining and removing duplication.

That is why you have different setups managed by their own little overlords whose goal in life is to maintain their little fiefdoms.

A lot of the older managers in HSE started off life in maintenance and moved into IT because, well shure it was kind of technical.

That is what you have been dealing with. Some of these people can barely turn on a computer.

Also one should see the infighting that goes on between people from different hospitals where once again it is back to the looking after my patch.

Things are slowly changing but it is slow.

jmayo

https://www.boards.ie/discussion/comment/120182218#Comment_120182218

Ever been to either of those countries ?

Comparing Ireland and the Irish to either of them is like comparing apples to spuds.

[Deleted User]

https://www.boards.ie/discussion/comment/120183589#Comment_120183589

Been to both. Yeah I know exactly what you mean.

[Deleted User]

I’m just imagining a scenario in 5 years time where by some miracle the Chief Exec of HSE & Minister of Health alongside a committee of private hospital execs have the dye set for a full integration of Health Service Records and where a suitably adaptable package has been identified. Next thing to do is employee a big team of suitably qualified & vetted contractors to integrate & amalgamate the data. In theory all fine. Then the hiccups where the existing unionised admin kick up that they want a slice of the action because the contractors are paid a better rate, and indeed the unions’ job is to look after existing workers. There’s be some news-filling shenanigans to say the least. If the unionised staff were offered good overtime opportunities things might work out.

[Deleted User]

https://www.boards.ie/discussion/comment/120183820#Comment_120183820

Unionised HSE staff have been working alongside highly paid contractors inside the HSE for years. This is not a new scenario.

Charles Babbage

It is a cop out to imply that unions are responsible for this mess, the problem lies with management. Employees in general will benefit from this and there is plenty of other work for anyone who duties are no longer required. First of all clarity of purpose from management is required and there is no sign of that.