Systems differ and patients die…

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:

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,

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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 10 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 local public hospital of 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 advised to see a neurologist as soon as possible. I made a private appointment and saw the 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 wait 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 satisfactory, 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 an osteopath who was also a physiotherapist (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 you 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 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, that 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 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 transfers need to be co-located and integrated.

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

With the current focus on the costs of healthcare systems, we must not lose sight of 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.

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, I was required to fill out lengthy paper based forms asking questions which should already be answered on my patient history file – if they had one.