If it looks like data cleansing, barks like data cleansing, smells like data cleansing then it’s data cleansing

Last week Radio New Zealand’s ‘Nine to Noon’ programme ran an excellent item based on two quality interviews highlighting the unsavoury outcomes of patient harm data cleansing for those people who require non-acute (elective) surgery but are either severely delayed or miss out. https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018788479/woman-will-spend-savings-on-hip-surgery-after-dhb-declines.

Beginning with a personal story

The first interview with a self-employed Wellington hairdresser Andrea Clinton in her mid-50s was gut-wrenching. Her arthritis is so bad she can’t walk more than five steps and is forced to spend $30,000 of her retirement savings to have surgery done privately because she has been declined on the public list.

Last September, following a pre-operation assessment, she was advised she would get her hip replacement within six months. This was upended by the Covid-19 national lockdown which led to the cancellation of all elective surgery thereby causing huge delays. Her condition deteriorated and is forced to take pharmaceuticals such as morphine and use crutches.

Much of this was sheer bad luck. After all how often do we have a pandemic. But now, despite being in increased pain and under greater stress, she has been advised by Capital & Coast DHB that she doesn’t meet the threshold for surgery, has to go back to the beginning again, and that her surgery would likely be within three months. This was the tipping point.

Being self-employed running a small business meant that financially she was dependent on working as much as possible but already it was a painful struggle to keep working. Consequently she had to go private at great personal cost. Our public hospitals since 2009 should never have been allowed to be so rundown that this despairing case is more typical than atypical.

The second interview was with Peter Devane, President of New Zealand Orthopaedic Association. While working for the Association of Salaried Medical Specialists for so many years I came to admire orthopaedic surgeons. The clarity of their expression, their love of good methodology and data, and having no concept of ambiguity were impressive.

Devane articulated all of this in his interview. Sad and avoidable experiences such as Andrea Clinton were ‘business as normal’ for him and his frustrated colleagues. He gave an excellent plain language description of how the current system works for non-acute elective surgery and why patients like Clinton get treated in the way they are.

Waiting lists to booking systems

I want to go back further in history and to be even blunter than an orthopaedic surgeon (no mean feat in my view). Until the mid-1990s public hospitals had a system of waiting lists for operations. The length of these lists, especially when they increased, became a focal point for the public judging how well governments handled the health system.

Waiting lists did have faults. Some of those put on lists found that over time their conditions improved (which raises a question in itself); some died but remained on it (rather embarrassing); and some were placed on it in the knowledge that they might never be treated.

Waiting lists were being refined and improved as it was the only system available. But when National’s Jenny Shipley was health minister in the mid-1990s waiting lists were replaced with a new booking system. Based on clinical prioritisation criteria patients whose scores were above the ‘threshold’ were booked in while the rest disappeared from the list. Hence no official waiting lists and political problem solved.

But, while the criteria were clinical, the threshold was financial. I recall a prominent cardiac surgeon saying at the time that the booking system was good if hospitals were well-funded system but dangerous if underfunded (as they were then). This danger was worsened by the inevitably subjective nature of applying clinical criteria to specific patient circumstances.

Booking system to ESPIs

There was a significant refinement in the final term of Helen Clark’s Labour-led government of the 2000s. Health Minister Pete Hodgson introduced Elective Services Performance Indicators (ESPIs) which specified how many patients should be treated or operated on within six months of being assessed.

It was then that I started describing the system as data cleansing because those requiring treatment or an operation disappeared off any list into in effect was a black hole (officially called referral back to their general practitioner from whom they came) to the angst of Hodgson and delight of National opposition health spokesperson Tony Ryall.

Despite Ryall’s delight he continued the system when health minister himself. The ESPI time period was gradually reduced until when Jonathan Coleman was minister it landed at the current three months.

It’s a political struggle

Conceptually the ESPI system has merit. But with public hospitals under continued financial pressure compounded with admissions of acutely ill patients increasing at a higher rate than the rate of population growth, its application is dangerous similar to the cardiac surgeon’s assessment of its predecessor booking system in the mid-1990s. Data cleansing sits behind harmful to patients as one of the deplorable consequences. This must end.

Solving the plight of Andrea Clinton and so many others living a life of continual and increasing suffering requires government action, including to address resourcing; specifically our severe shortages of health professionals.

Karl Marx said that the class struggle was a political struggle. Today he might well say that the health system access struggle is also a political struggle.

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