Desperately seeking sanity

As an independent advisor to Matrix Informatics, I am delighted to be reaching out with opinion pieces on topical stories through the Matrix blog, as well as the Centre’s blog.  My views of the world of health informatics will be shared through their pages, complementing my work at Cass.  Please do visit…. 

My first blog on their pages looks at the opportunity presented by HC2012 – just 12 days to go to the first major health informatics conference & exhibition in the UK since the formal demise of Connecting for Health.  Will the NHS seize this opportunity by a “more of the same” strategy, or by openly seeking to learn from the history in other sectors?

Here we are, at one of the most critical times for the whole global healthcare industry.  Needing breakthrough solutions that will simultaneously enable people to achieve greater fulfilment despite living with chronic conditions, and achieve better and safer outcomes across an increasingly complex range of life-threatening acute conditions.

Now is the time for sound judgement from courageous leaders who won’t be shackled to past ideologies and mistakes.  Instead we see insanity replayed….

Read more…..

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From forlorn despair to hope in one day

Those of us involved in any way with the care ecosystem need to keep our mums and grannies and kids in mind.  Whether we are commentating or deeply involved in delivery, commissioning or education.  Yesterday provided one such opportunity – a hospital appointment for my mum.  It was always going to be difficult! 

I had mentally taken that extra beta blocker as preparation, but I hadn’t reckoned on the real cause of the stress.  There is no better word than primitive!  Mum’s record was only about 3 cm of paper in a tattered and torn green folder with an elastic band round it and containing her previous two addresses, but not the current one.  The scheduling system was determined by where this folder rested in a large pile of similar folders, few less than 2 cm and some up to 8 or 9 cm thick.

The first check with the nurse took 5 or 10 minutes longer than it needed, because the part of the record she needed had only been added as a comment at the foot of one page somewhere in this stack of inaccessible information.  She kept overlooking it in the search for a more substantial and carefully constructed account of a previous treatment cycle.

For the next half an hour, I watched as this teetering pile of information was shuffled and inspected each time another patient completed the pre-assessment to begin their wait for one of the three doctors in that clinic.  Goodness knows what the glancing look proved, but it was a ritual which clearly provided some satisfaction to the nurses amidst this forlorn process.  Perhaps I dreamed the papyrus scroll sitting there next to the ink-well and the neatly clipped feather!  At least one patient appeared to be missing that vital folder, but maybe it turned up.  I couldn’t keep up my excitment levels to notice!

I’ve been working with IT systems for so long, I had forgotten that life can still be so primitive and processes inexcusably mismanaged!  

And this is the point to ask: “how could we get the National Programme for IT so badly wrong?”  The potential for improvement in safety, quality, efficiency and outcomes is just so obvious.  Any engineer will tell you that weaknesses, failures and poor quality happen at boundaries between systems and processes and organisations.  And here, in these fat, green, scruffy folders are a series of broken boundaries on show for everyone to see!  This is not a technology issue.  This is a basic fact that, following the command to do no harm, the next most important rule for every clinician must be to keep an accurate, reliable record of every aspect of the intervention, which is communicated effectively to anyone else involved in delivering care.

And then later that afternoon, as I sat in recovery mode with steaming towel round the forehead to dissipate the stress, in through my inbox came the report from the working party of clinicians seeking to establish a basic standard of clinical record keeping.  As I mused on the way this was reported, it read just like a repeat attempt to reinvent the technology mistakes of NPfIT.  But I had been privileged to engage with one of the leaders of this work at the beginning of the month.  

This is different! 

It has the potential to be revolutionary!  

It is the work of each Royal College and other luminaries, stating that the solution to better outcomes, greater efficiency and more inclusive working with patients and carers must begin with these clinicians focusing on transforming the way clinical records are defined and kept.  Defining and adopting structure and standards which will later lend themselves to better use of technology, intelligent mining, and ease of sharing! 

This is the first real sign I have seen that the kind of monumental change we need to see right across care, must begin with the experts in the care processes powering it forwards by driving the development of appropriate tools.  This is real clinical leadership in action!  Don’t be confused by the way it is reported!  This is good stuff!  

I continue to be fascinated by the juxtaposition of apparently different streams of intelligence and observations.  Sometimes the light bulb moments are genuine and uplifting.

Folks!  There is hope!

Just how do we define the priorities in health?

I’m not usually slow to understand, but I’ve just been forced to think hard about what I am missing.

I am under the impression that we are deeply in the economic mire, and that everyone is grasping at straws to try and find some savings from their budget simply to break even, let alone contribute to the £20bn savings required to offset the growing pressures of the demographic challenge, most of which comes from increasing demand of more people needing to manage their chronic condition for a longer time.

I am also still of a mind to think that the NHS remains firmly wedded to the aims of improving patient experience, improving quality outcomes, and helping people to enjoy a greater sense of wellbeing – that pithy little adage about years to life and life to years which still does it for me!

I keep seeing policy statements about localism, and devolved responsibility, and nudging closer to our partners in local authorities, and latching into their long-standing skills in commissioning.  I keep reading how desperately we need to engender a spirit which thrives on innovation, and that we absolutely must find and plant the magic beans which will automatically sprout into widespread adoption of proven ideas.  I keep hearing people talk about using technology more effectively.  I keep working with clinicians who are regularly patted on the shoulder and told how important it is that they take a stronger lead in decision making, because, after all, they are the experts.  I talk to experts on corporate governance and leadership, observing the profound wisdom that leaders need to balance effective processes, with good judgement and a dose of personal accountability.

But then, I read the topic headlines from the Department of Health, and I am confused.  The last week or so, has seen 41 pages of detail preparing the transfer of public health to local authorities, 86 pages of command to Aspirant Foundation Trusts to demonstrate that they are sufficiently on the ball to look after themselves, plus goodness knows how many memoranda instructing doctors precisely how to configure their CCGs.  Rank this alongside a staggering 4 pages of passing comment on the Whole System Demonstrator evidence of just what telecare and telehealth can achieve.  Evidence from 6000 patients, supported by 240 GP practices, showing a 45% reduction in mortality, a 15% reduction in visits to A&E, a 20% reduction in emergency admissions and an 8% reduction in bed days.  

These findings merely put substance behind the intuitively obvious: that technology is just as capable of changing our business models in healthcare as it has been for every other service industry.  They suggest that we don’t need to wait another three years, for any more studying.  We don’t need to have another document from the DH micromanaging innovation, or bemoaning lack of adoption.

I am sure I must have my priorities wrong somewhere.  I still can’t reconcile why policy is measured in kilograms of report, when some of the best evidence for policy change appears to be defined by improved outcomes, more stable health and some pretty impressive efficiency numbers.  Ah well!

Trust them with the numbers

In 1972, Archie Cochrane launched the new phase of healthcare, when he observed an almost random level of variation in successful outcomes of supposedly similar treatments at different hospitals.  The seeds were sown for evidence-based medicine, and application of scholarship to discover what constituted best known practice for medical treatments and interventions.  His name is immortalised through the work of the Cochrane Collaborative which relies on the collective efforts of many scholars critically reviewing and synthesising published research to establish gold standards for all to see – doctors and public alike.

So, nearly 40 years down this road,  some of the best minds have been pressured into agreeing a new indicator which seeks to predict what levels of mortality are to be expected at each hospital in the country.  If you have been following the debate, you will be aware how much this has led to intense deliberation, argument, counter-argument and near rebellion on occasions.

No-one is claiming that this is an easy task.  We know, for instance that there are direct links between disease and socioeconomic status, geography, gender, ethnicity and lifestyle factors such as smoking.  We also know that different treatments and interventions carry different risks.  We aren’t surprised therefore, to realise that the predicted mortality rate for a hospital will be affected by the complexity of care it provides and the characteristics of the population it serves.

So you would expect it to be difficult to predict accurately how many people are likely to die within 30 days of being treated in hospital.  That is what standardisation is all about, and why the indicator is called standardised hospital mortality indicator (SHMI).  No-one has ever pretended that delivering healthcare is easy.  Doctors have to do difficult things  most days.  Nurses do different things, equally difficult.  Managers too have their share of difficult things, but, despite being politicians’ favourite targets for abuse, they contribute to the success or otherwise through their planning and management of resources to keep the healthcare system running.

So it is right to expect people who do difficult things to be accountable to the public whom they serve.  You would expect someone to be accountable for predicting the likely number of deaths a hospital can expect.  You would expect the publication of such information to be contentious because it takes away some of that air of mystery that professionals can generally get away with creating.  

Two surgeons with the same mortality rate can in reality be at the opposite end of performance – the very best and the very worst sharing the same raw number.  The one who takes on all the cases that are too risky for anyone else to consider, and in so doing saves many lives, offers a completely different level of care from that of the incompetent surgeon who fails on even the easy cases, and ends up taking lives that didn’t need to be lost. 

And raw numbers can indeed tell such a tale.  Unfortunately, within a society where most people run scared of numbers, our first reaction is more likely to be to worry about how people will misuse such raw figures, instead of concentrating on helping overcome their fear so that they do know what to do with them.  I always say that the data rarely provides answers, its power is in helping you to understand what questions to ask.  And asking the right questions in the above example very quickly leads to a clear understanding of what is happening.  Only the incompetent in our example has something to fear amongst an educated population, and rightly so!

So, when we look for the evidence on mortality, we expect clever people to work their magic in such a way that they can help Joe and Miranda Public to see whether their local care services are doing a good job or not.  The experts need to put twice as much energy into educating people how to interpret those numbers, than they do in producing the right values in the first place.  The sort of good job Archie Cochrane was worried about back in 1972.

So when the Information Centre published its new evidence exposing the considerable variation in performance between hospitals, we expected transparency on the numbers, supported by meaningful education to allow people to make sense of it for themselves.  Instead of this, energy seems to have been spent on building the smoke screen behind which the hospitals and clinicians can continue hiding from the ongoing and horrific reality of unwarranted  variation. 

Of course we want all hospitals to offer the same high quality outcomes, but we aren’t there yet, and until we reach such a utopia, we should each have the chance to make the personal choice of how much inconvenience we will accept so that we can get to the very best, if we so wish.  Alternatively, we might choose the extra risk so that we have minimum disruption.  And that trade-off is not as obvious as you might think.  People diagnosed with cancer in the Isle of Wight frequently choose a regime with an inferior prognosis so that they can stay at home on the island, rather than choosing a much more intensive treatment regime away from family and friends in Southampton. That is what choice is about, and why it is so important.

But sadly, those clever people in the Information Centre have determined that the data on mortality is far too complex to translate into an accessible form for the public to digest. Instead it is presented, buried in complex, highly caveated reports aimed at fellow statisticians.

Now I know a thing or two about statistics.  I know that most people do indeed have more legs than the average person!  So I’ve looked at the data with interest. 

I live in Ipswich, and I know that no relative of mine has had a good experience from my local hospital, and that its leaders only ever face the light of day defensively.  I was pleasantly surprised to discover that its performance is pretty close to the centre of the band you would expect it to be in.  I was even more surprised to discover that the hospital local to Cass is predicted to have a similar number of deaths each year, despite providing much more specialist care as well as facing the more complex health demand of its east- end population.  But instead of the same number of deaths as predicted, it positively glows at number two in the country for lowest mortality.  It only had around 68% of its predicted number of deaths.  Well done Barts and the London!  But if I got off the train in Colchester by mistake, then instead of a similar number again, this time I would have found data pointing to worse mortality: 5 deaths for every 3 at Barts and the London.

We may be delivering more sophisticated treatments, and calculating some pretty clever stuff to produce these figures compared with Archie’s day.  Like him, we know that we must avoid ascribing too great a precision to our findings because the statistical significance of each of the standardised mortality figures is never better than 5-10% or so.  But even though these subtle niceties may be lost in translation for many people, we have to trust the public with such serious trade-off as 5 versus 3.  After all, this isn’t 5 tins of beans from Morrismart for the price of 3 from Markrose.  This is about lives.  Shorter than necessary lives.  Well and truly short-changed!

The perils of ambition

The Department of Health has today issued a press release headed “Dismantling the NHS National Programme for IT”, and I am wondering how that core message will be conveyed across the media in the coming days.  There is clearly a headline waiting about the dreadful waste of money.  Or another one bewailing another Government IT failure.  Perhaps a triumphallist roar of “about time too!”

But underneath the surface of the report are some facts worthy of a moment’s consideration.  The programme’s total outlay has been much less than the agreed budget at “only” £6.4bn.  Big numbers?  Well, no actually!  Around 0.8% of the NHS’ operating budget over its 9 year life, and Wanless demanded at least a 2% growth in IT spending to around 4% of budget, to modernise the NHS’ ability to deliver world class care.  Comparable customer service industries spend maybe 10-15% of their turnover annually in the tools of understanding and supporting their customers.

And whatever sensational stories you read about this programme, the Cabinet Office report from the Major Projects Authority notes that around two thirds of this £6.4bn has delivered important contributions – some on technical infrastructure including connectivity, some on the tools and information to enable better planning and management, and some on hugely important clinical tools such as the PACS technology which all hospitals have adopted to bring diagnostic imaging out of the dark ages of ordinary films.  But I doubt if you will read elsewhere that the UK is the only health system in the world where our primary care physicians – our beloved GPs – have received specific payments for the last 7 years based on quality.  And the National Programme delivered the support for that without a fuss, so that some of our population health data is now the envy of the world!

So, with all the hype, there is a little more than £2bn which the programme has wasted over 8 years.  A few bankers’ bonuses misplaced perhaps!  Around a quarter of a percent of the total NHS budget which has failed to deliver the expected improvements.  Contrast that with maybe as many as 30% of interventions which are unnecessary, inappropriate or unsuccessful, and contribute to wasted budget.  

So, the travesty is not in the money, valuable though that could have been.  The travesty is in the lost opportunity!  The dashed ambitions!  The desperate need for real, valuable information by which care outcomes will be improved and efficiencies achieved.  More than any other area of healthcare, it will be better information which will drive this quality. Better information helps ensure the right treatment, at the right time.  Better information prevents errors.  Better information allows clinicians and managers to plan their resource needs more effectively.  Better information helps the doctor-patient dialogue.  Without better information it will be impossible to respond to the challenges constantly battering at our health and care system.

What matters now, is that the nail in the coffin of the NPfIT marks the beginning of renewed confidence throughout the care system that it is worth investing in systems that do work.  Those which present the clinicians with the best possible information to direct them to the most effective interventions.  It is worth investing in the sort of management information systems which will allow good leaders to transform organisations and teams from being burdened by administrative problems, to being at the heart of well oiled intelligent systems.  No more grand scheme heroics trying to solve the world, but real, local health intelligence systems that pool information, agile technologies that can respond in a matter of days to innovative ideas, and above all, a workforce confident in using the very best information and tools available.

What does it take to shock us?

However deplorable the terrorist attacks were a decade ago, and however much the impact has reverberated around the world, it remains a mystery to me how we can be shocked beyond measure by one circumstance, whilst another source of pain to society remains almost unnoticed.

There were just under 3000 awful and premature deaths on September 11th 2001 – devastating terorist strikes, destroying the hopes and plans of 3000 families;  reverberating across New York communities, leaving orphans and widows in its wake.  There have been almost daily incidents around the globe since then, with too many of them causing death tolls above 100.

But in the decade since then, nearly 7000 US citizens (military personnel and contractors) have been killed on the war fronts of Afghanistan and Iraq.  It is difficult to count the deaths on the other side, but estimates vary between 25 and 50 thousand directly killed and maybe 20 times that number of “excess” deaths caused by a combination of sanctions and war conditions.  What an awful term: “excess deaths”!

But where are our thresholds of unacceptability?  The same decade has seen around 150 thousand homicides across American society – 15 Americans killed by local violence for every single one killed either in the twin towers or in the war zones since.  And what of the 360 thousand Americans killed in road traffic accidents – casualties of life.  Are these any less devastating to the friends and relatives?

But here is the real rub!  Nearly 1 million “excess” deaths across the USA because the American health system has so many holes in it!  If the life expectancy in the USA was equal to the average value across the OECD nations, more than 900 thousand lives would have been saved in the last decade.  Investment in UK health reform in the same period has successfully closed the gap from its poor performance, so that in 2009 – the latest full year data, the UK crossed over to better than average life expectancy.  But procrastination about American healthcare reform  has seen its gap continue to widen almost every year, so that the average American can expect to die 4.8 years sooner than his or her Japanese counterpart, and 2.1 years sooner than the average throughout OECD countries.

How does the shockwave of such appalling devastation of life and relationships pass by so unnoticed?