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The Wanderer above a sea of fog by Caspar Davi...

Why limit your view when you can see this far? The Wanderer above a sea of fog by Caspar David Friedrich, around 1818 (Photo credit: Wikipedia)

“The Open Data Era in Health and Social Care”, prepared by GovLab (NYU) has been released.

I have no issue with open data, and the more open the better. However, doctrine may interfere in respect of the way data are viewed in the UK.

The typical model is to focus on the NHS, as the main provider of healthcare services. Certainly, this makes good sense, on its own. But the NHS is not on its own. The title is a bit misleading, in that while Social Care in included, the English NHS this is not integrated, suffers from bureaucratic accounting rules that prohibit pooling of budgets (hence the problems with the Better Care Fund), coupled with means testing, a cash market, and a major role of charities in filling in service gaps. Countries with patient-copayments and transaction data manage to integrate health and social care around the patient because of the ability to avoid arbitary distinctions between provider types and their ownership. As a result of what is both a strength and weakness of the NHS, policymakers have had and continue to have considerable conceptual difficulty integrating public and private provision into a patient-centric and whole-system model of seamless care.

Healthcare is bigger than the NHS as people in the UK can buy private health/medical insurance, pay cash for private treatment or use private hospitals under NHS contracts. In addition, patients seek services from dentists, physiotherapists and pharmacists, and others, who in the main are outside the NHS in terms of practice patterns.

Let’s take medicines. Years ago the NHS explored electronic prescribing, a project initiative I was doing some policy work on. I had asked whether private prescriptions and dental prescriptions were to be included and was told, no, they were excluded as this was an NHS project. Of course, thinking such as this means that they were failing to look at the whole system of medicines prescribing. A patient for instance who is prescribed an antibiotic by a dentist (and they prescribe a lot of antibiotics) would discover not only that that information was not available to their GP, but the GP would likely not know that dental surgery had even taken place. And private/independent prescriptions were simply off the table!

The only way that Open Data Era thinking can prevail is when the English NHS and the Department of Health adopt whole systems thinking. The modern world is full of boundaries that are being breached by new technologies, that are challenging assumptions of the past that in the future will prove dysfunctional.

The NYU report (I am surprised at the lack of whole-system perspective — perhaps they didn’t know about the wider health system??) does not address the distinction between NHS and private/independent data (though they do make the point that Open Data might be used along with private or independently held data, but in the context of my remarks, this seems a fudge).

I won’t go into a detailed analysis of their logic model on page 45 of the report which crystalises their essential argument. Logic models are conceptual models that link various elements (inputs, outputs, outcomes) to desired impact in a coherent (logical) way. Needless to say, they start with NHS data. Examining the Activities/Outputs parts, would suggest that the full realisation of the stated benefits will not be possible. Limiting the data in, as the model does, means that achieving operational efficiency or resource allocation (impacts) will lack private sector comparators for instance. One output, Policies Created/Changed, is immediately compromised by the inability of the model to account for the role of the independent/private and not-for-profit sectors, which is about 10% of the total activity and expenditure. Indeed, their definition of ‘internal users’  (page 48) excludes non-NHS entitities, and they aren’t seen as ‘external users’ who might need to access NHS data. Furthermore, the approaches proposed to capture measurement limits the focus to state-mandated bodies (i.e. NHS), and therefore limits the ability of measurement to assess potentially new approaches to care that may be invented. So much for measuring innovation.

It would have been better to start  with the needs of data users and their objectives, in a whole system approach. This is the fundamental weakness in the logic model and limits the report considerabley. In the end, it makes me worry that the initiative will in the longer run fail to be as successful as it might be.As Einstein said: “No problem can be solved by the same kind of thinking that created it.”

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In this Age of Austerity, good ideas risk being lost. The dynamics of funding of innovations has always been full of risk. But as various debt-laden governments try to balance bloated public balance sheets, should we worry about where the ‘next big thing’ will come from? Yes, if you believe that governments can find and fund winners (the evidence says they can’t by the way, but can act as catalyst or midwife), no if you believe that the wisdom of crowds, otherwise known as markets, might be a useful driver of innovation development and adoption.

The diagram below summarises the funding of innovation, identifying in particular the so-called ‘valley of death’ where good and bad ideas go to die for lack of funding. The risk we, as taxpayers, face is that governments will continue to fund innovations into the valley of death, perpetuating what I call the ‘research funding welfare state’, where research happens, but innovations don’t. Hyperactive civil servants with indelible portfolios will continue to pursue dead-end projects despite evidence that the world has moved on. The real problem for governments isn’t finding money for funding research (though that is hard enough), but realising a simple algorithm:

  1. the world is characterised by change
  2. the world will change faster than our ability to respond
  3. this will not change.

Europe has a shortage of innovation gorillas compared to other countries, and if the politics of some countries are to be believed, would rather retreat into a safe haven of social solidarity and protected interest groups, than face the harsh realities of the modern world. This Fortress mentality will not keep the disruptive wolf from the door and will only add to domestic turmoil as native talent packs up and leaves for more encouraging countries.

The harsh reality of innovation is that it can be violent, overthrow trusted ways of doing things, and challenge what may be thought of as defining cultural norms and social innovation is just as much part of innovation as the inventions themselves. The other true thing about innovation is that it knows no favoured nation or culture — anyone and any country can do this.

Find the risk

English: Diagram relating various pre-test pro...

Huh? (Photo credit: Wikipedia)

The media do have considerable trouble reporting health statistics partly because these statistics often report probabilities, estimates, and approximations. Phrases like “x times more likely” abound. Without knowing what the base likelihood is, we have no idea whether this is a lot or a little. So small numbers can sound impressive and people can be easily mislead into think that they might live forever. Like reporting that 42% of the population will die with or from cancer — the difference is important: men frequently die with prostate cancer, but not from it.

What do you think this paragraph means from The Guardian newspaper: (by the way, a search was unable to locate the relevant document the article was based on. Newspapers should these days cite the names of the documents, with links, to enable independent followup.)

“Twenty-year-olds are three times more likely to reach their 100th birthdays than their grandparents and twice as likely as their parents, official figures show. A baby born this year is almost eight times more likely to reach 100 than one born 80 years ago, according to the figures issued by the Department for Work and Pensions.  A girl born this year has a one-in-three chance of reaching their 100th birthday, while boys have a one-in-four chance.”

Many people look to the media for information on health, but it doesn’t help when within a single paragraph (!) we are confronted with this rush of statistics.

They sound important, like they ought to mean something. But what? Can these statistics be converted into something that might actually shed light on what the the numbers might mean or is the newspaper just repeating statistics in the usually confusing way papers do? (Another example of where papers confuse when they report statistics, is they’ll say something like the number of mortgages issues declined by 1% last month; of that 200 were remortgages. Huh?)

Today’s grandparents were probably born, say, 1930, when the life expectancy was about 60 years, while today it is about 75, and for a twenty year old today it is estimated at 100, 80 years from now. Life expectancy rose about 15 years between 1930 and today (about 80 years) and will rise a further 25 years by the year 2090. Hmmm, that suggests growth in improvement in life expectancy is accelerating as it will increase 40% or so more over the next 80 years than if it just continued at a steady, linear, pace.

Most people die by 100, and certainly for this discussion, we could say 99% of the population born in 1930 will be dead by 2030. So I had a tiny chance of living to 100 if I were born in 1930 and now a baby born today has an 8 times chance, which still seems like quite a small number. We also know it is twice as likely as that person’s parents, say born in 1950 of whom most will also be dead by 2050.

Let’s be generous: 1% of the population lives to 100 born in 1930, now 8% of the population will live to 100. Is that what they are saying? But it also says that boys have a 25% chance of having a 100th birthday, while girls have a 33% chance. Are they saying that of 100 boys, 25 ‘may live to 100’, and and is that broadly equivalent to an 8 times improvement over their grandparents? Hmmm.

So how many boys born today will live to 100? And how many girls? Answers need to take account of the probabilities, so we also need to know if the various statistics in the quote above are compatible with each other or are they inconsistent? Do you think an average person would understand the article? (By the way, we know that doctors often misunderstand what statistics like this mean when referring to the likelihood or not that people may or may not acquire a particular disease or condition, so if that is true, what are the chances for the rest of us: 1 in 50…..?)

Post your answers.

QED, I think.

 

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Urinal

Industry accountability for public contracts. (Photo credit: Ron Knox 2001)

I was watching the Public Accounts Committee on 23 May 2011 take evidence from IT suppliers and NHS executives on the NHS IT contracts. This monstrous contract was doomed from the start, yet few seemed to be in a position of influence to alter the ‘group think’ that prevailed in government. Civil servants and ministers seemed to breath each other’s air as they pursued this pig in a poke. Worringly, the PAC exchanges shed a bit of light but more revealing was the lack of common language amongst those concerned. Frequently, answers were not relevant to the question, used jargon or introduced further obfuscation.

In the end, whether supplier or NHS exec, the PAC was faced with a sea of denial, avoidance, or sheer hubris. I say hubris as NHS executives in particular were at pains to avoid rocking their own boat by being completely candid about things, preferring warm phrases that all was well, despite the CEO of the NHS being unable to answer many questions clearly, and seemed painfully ill-informed of his brief.

Evidence of obfuscation abounded as the MPs had to ask suppliers many times to answer with yes/no to what were straightforward questions. I was impressed with the efforts of some MPs (Bacon in particular) to get clear answers to important questions.  As a rule, complex answers betray a lack of understanding of the underlying logic — there are simple answers to these questions, not ‘it depends’ or ‘you’re comparing apples and oranges, pears’; indeed, at one point, the sessions seemed more about the comparative merits of different fruits than IT procurement. As well, the lack of clarity of underlying logic also evidences people were unable to agree on what the core problems were.  Now, granted for some this is likely to be a complex problem (in the technical sense of the word, a wicked problem), but I doubt that — the NHS’s needs and responsibilities are complex, but an electronic health record is a thing, with a defined functionality.

I remember sitting in a room just as this NHS IT for heatlhwas being firmed up (2002), and hearing the Director (Granger) at the time speak glowingly of the benefits. Upon hearing this, others in the international teleconference asked, “surely you’re not serious about doing this”, to be told, “absolutely”. As is said, act in haste, repent at leisure.

An important question was, knowing what we know today, was the original decision to proceed with this central and top-down approach sensible? The answers were evasive and broadly technically wrong. In 2002, it was perfectly possible to develop distributed systems, with broadly distributed functionality using various systems integration options to enable diverse technical architectures to co-exist to deliver uniform service. No one wanted to think that way for a couple of reasons. The first is ego: grand plans appeal to people’s ego needs, to be in charge of something big. The Director at the time exhibited serious Machiavellian behaviours, and failed miserably to engage users.  The second is conceptual: at the time, Department of Health and NHS executives were still thinking the NHS was a single lumpen thing that needed single solutions to its complex problems. In the early 2000s and late 1990s, that the NHS should be seen as a complex adaptive system was understood, but not acknowledged as it flew in the face of prevailing ideology about central control, driven by the mistaken (technical) belief that a distributed system, while diverse and pluralistic, would be unable to deliver a common standard of performance.

In the end, you end up with a system that is rigid, technically obsolete as soon as it starts operating and because it fails to evolve with changing clinical needs, which will change as clinicians become familiar with the technology and comfortable with its use, and start to specify more sophisticated applications. That some PAC evidence said that clinician need had evolved is nonsense — we know then that these were the core needs. Anyway, we’re moving on to smartphone apps, and there is little evidence that the system can accommodate the wireless world of healthcare. The best selling clinical app is ePocrates, for drug information. How many clinicians have that app? How many clinicians are using smartphones? Distributed and simple systems can deliver often quite complex solutions; for instance, the Danish electronic prescribing system was built on simple secure emails.

The approach that was ignored at the time was this:

  1. specify common standards of interconnectivity and functionality, that is results;
  2. allow providers to use whatever system they wished as long as it met these requirements;
  3. allow the system to evolve over time as needs become better understood;
  4. start with the patients who are heavy users (high risk/high utilisation) and roll out from there.

That’s it.

Where the English NHS and Department also lost the plot was failing to exploit the NHS IT project to drive innovation into the IT sector to encourage the formation of a potentially world-class health IT industry in the UK. Is it any coincidence that the main solutions are from outside the UK and the critical supplier expertise betrayed North American origins?

This is a real shame, as once again the Department has shown antipathy toward enabling a commercially successful and innovative health supplier industry, in favour of mean-spirited control. This was perhaps the greatest missed opportunity, as instead, the Department came up with false logic of needing suppliers of scale (who are now quasi-monopolists).  Indeed, one member of the PAC did question whether CSC’s corporate logic was to make itself a monopoly supplier to the NHS.

The tragedy, too, is that virtually all the functionality that the NHS needs can be downloaded for free in the form of open source software.

Finally, the best thing the NHS and the Department could do is make sure all that intellectual property that has accumulated is given away, to try again to jump-start a health IT industry. If there is a value-for-money lesson the PAC could draw it is to determine whether there is sufficient residual value in the NHS IT procurement to be translated into investment in the economy, to build new suppliers to the NHS and perhaps the world. An opportunity awaits.

UPDATE

I thought I’d add reference to this diagram on distributed clinical systems. The copyright dates from 2002, a time when the PAC was told such capability didn’t exist. The diagram is taken from the OpenEHR website, which adds “Much of the current openEHR thinking on distributed computing environments in health is based on the excellent previous works of the (then) OMG Corbamed taskforce, and the Distributed Healthcare Environment (DHE) work done in Europe in EU-funded projects such as RICHE and EDITH, and the HANSA and PICNIC implementation projects.”  In those days, the UK’s NHS was still charting a proprietary, and non-standard, approach to EHRs and clinical systems; an example of one failed programme is the ‘common basic specification’ — there is an interesting commentary here on some reasons why it failed.

 

Diagram of a distributed clinical system, ca 2002

 

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Charlie Chaplin from the film The Great Dictator

Charlie Chaplin from the film The Great Dictator

The health of nations and their peoples can be closely linked to the state of their leadership. David Owen, in his book “In Sickness and In Power” (review here), presents a variety of examples from recent history of leaders with illnesses and in what ways their illness affected their abilities as leaders.

One particularly important ‘illness’ he mentions is called hubris.  Hubris in leaders means they are unable to acknowledge defeat, read the handwriting on the wall, admit mistakes, and importantly, resign from office.

Some of our fellow travellers on planet Earth are inflicted with leaders subject to this illness, and who don’t know when to resign. The countries where this is apparent are many, not all are autocratic states, but it is in autocratic states that the power of the leaders can silence opposition and perpetuate their unhealthy tenure in office.

So here is some career guidance for autocrats:

  1. Nothing is forever.  You won’t understand this. As a probable psychopath you’ll cling to power until your hands are chopped off. But more importantly, you don’t understand history. Every single autocratic regime in history has either collapsed from within or been overthrown from abroad. Your time is limited, and you may think you’re different, that you’ll create some time-defying legacy, but you’re wrong. The problem is knowing when forever ends, as you are like the boiled frog — the incremental slow building up of social, political, economic forces inside your little world are relentlessly cooking you and you are not noticing this. You’ll learn too late that it is too late.  Better to go at at the top of your game (that way you don’t have to spend the rest of your life hiding in some desert with your money frozen in a Swiss bank account). But you don’t understand this either, as the good times are rolling for you and you don’t think about the future as you live in the here and now. Tick tock.
  2. Love your children. Your efforts to create a dynasty will only serve to delay the inevitable. If you are really concerned about your children, you will not want them to follow you. Succession within families, even monarchies, is a difficult process, and the accumulation of public dissent over the years and across generations means that you are often signing the death warrant for your children. As a caring father, (most autocrats are male; it has to do with testosterone), you should listen to your wife (assuming you’ve restrained yourself to one) who understands better than you that a dynastic approach will lead to the sudden termination of your children at the end of a rope or a bullet.  So better to decide that you are the first and last of your kind, and ensure your children get a good education and do not follow in your own footsteps.
  3. Trust others. Of course, this is hard to do as you are unlikely to trust many people, but think you can at least trust your family. If the only people you can trust are in your family, be warned: families can become breeding grounds of real jealousy, particularly between siblings — that’s why you shouldn’t buy off your brother’s affections by making him head of the secret police.  This advice only applies if you display normal human emotion such as love; otherwise, you treat your family simply as pawns in your self-serving game.
  4. Embrace dissent. Since you have probably run your country with an iron fist for sometime, people around you have become sycophants; better that than be put in one of your dirty jails. That means that you are not going to get good career advice from your advisors as they will be self-serving, too — you can probably still dish out the treats for those around you and there are always people who suck up to people like you (you like this, but fail to notice that it lacks sincerity). They will not tell you that you have passed your sell-by date. This means that you should be mindful of those who disagree with you, as they may be right. Exiling them only buys you time, as they have a tendency to show up a few years later to replace you.
  5. You can’t be a benevolent autocrat. This is an oxymoron. People don’t love you, despite what you may think. What you see as benevolence is really just evidence that you don’t think your fellow citizens are smart enough to lead their own lives; you act as though you are the only one who knows what they need. But this is of course silly, despite the fact that you may hold court in some palace where the ‘ordinary citizen’ comes for guidance, even justice. Such a forum is simply medieval and perpetuates your belief in your own importance, but carries little by way of real substance.  Furthermore, the evidence that you aren’t loved is all around you if you took the time to look: you travel everywhere in armoured vehicles, surround yourself with a private army, sleep fitfully, perhaps suffer from constipation and that can make anyone bad tempered. You kid yourself into thinking that you are acting in everyone’s best interests, but if you’ve read the other 4 points, you know you are living in a gilded hell.

It is worth adding that this advice can apply to all of us, whether democratically elected politicians, appointed chief executives, very rich, parents or simply ourselves.

pictogram for silence areas

Silence, please, presentation in progress.

In these days when the use of taxpayers’ money to bail out failing economies, and politicians are grappling with rising public debt, it is always timely to reflect on how the Commission spends our money. Without obvious evidence that it understands the notion of ‘belt-tightening’, meetings where the minutes are taken and the hours are lost will continue to proliferate without some mechanism to constrain this upward spiral of expenditure. Can Council members constrain this growth with the funding of the European institutions, when they themselves are beneficiaries of the very same profligacy with taxpayers’ money in their own countries?

As health is my area of expertise, I am always interested in how the Commission determines its direction in the health space, how it uses the various agencies operating at the EU level to counterbalance the influence of the member states. And of course how criticism is absorbed or neutralised within this great steampunk machine.

I wondered about this when I was reading the latest (draft) minutes of the renewed (!) Health Policy Forum. I was struck by the possibility that this group is not designed to be a critical participant in the developing of ideas and therefore, I wondered what purpose it served.

There is a clue on the Forum website: “The Health Policy Forum brings together pan-European stakeholder organisations in the health sector at EU level to ensure that the EU’s health strategy is open, transparent and responds to public concerns.”

But the efforts at renewal were designed specifically, as far as I can see, to align this group with the Commission’s workplan and to ensure that it acts favourably toward Commission initiatives. We read (of the opening of the meeting): “In her introduction to the meeting Ms Testori Coggi presented herself and underlined the importance, role and mandate of the EU Health Policy forum. She stressed in particular the importance of activities in the field of disease prevention and health promotion including lifestyle related activities and health literacy.” In other words, this is what is important, regardless of whether you think otherwise.  I have no difficulty with these as general goals but they are largely opaque generic terms. The devil is always in the detail, and that is what we didn’t read about.

The meeting must have been most enjoyable, as it seemed to consist of a parade of presentations (no doubt more ‘death by powerpoint’) by people telling the Forum attendees what they were doing. Why bring your brain to a meeting like this?

I was also taken by this interesting line in the minutes: “Member organisations of the EUHPF are in particular invited to talk to their constituencies in the Member States in view to engage as well the national, regional and local level with the aims and objectives of the EU 2020 strategy in order to strengthen the health and social impact in the implementation of the strategy.” In other words, your job it to get the word out, not to engage with ‘us’ critically about what the strategy should be. Do your job, we bought you lunch.

The minutes indicate that questions were asked, such as CPME’s on e-health and cross-border healthcare, to which the presidency ‘agreed’, but whether anything will actually happen isn’t clear. The questions were absorbed into the rhetoric of the meeting, with soft noises of agreement and acknowledgement. But nothing really challenging was asked (assuming the minutes reflect the dynamism of the meeting) and, no doubt, no one was offended.

I wonder if those attending knew they were quiety being co-opted to act as agents of policy rather than engage in a meaningful policy-oriented discussion within a market-place of ideas.

I guess that’s what a Health Policy Forum is for.

Is there a directory of entities like these, do we know what are they for, do we know what they cost, and do we know if they make a difference?

Am I bad tempered about this? No. I want these processes to work, I just worry that in the rush to be accepted as a stakeholder, these groups may neglect their critical perspective. One must always be mindful of rent-seeking behaviour by the Commission, especially when it comes to forms of consultation.

NOTE: The forum lasted one day, involved 10 Commission employees, a secretariat of 4 people, 2 people from the Council (Belgium, Spain) and some 67 people from the ‘renewed’ stakeholder membership.

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A Hill-Rom hospital bed

How many of these do we really need?

Before we all jump off cliffs over apparent bed shortages in hospitals in the UK, we need to keep in mind at least two points.

1. According to the OECD in 2009 (a reliable source of comparative data), the UK has 4.1 beds per 1000 people, higher than the US at 3.6, Canada at 3.9, about the same as Spain but certainly less than say France at 8.4 or Germany at 9.2. Countries with higher bed numbers also use hospitals a lot more for things can be treated in primary care, a preference shared by many patients. Using less beds does not equate to a shortage of beds.

2. Beds themselves are not what there is a shortage of, but the ways they are used. The UK is broadly quite efficient in bed use (which is code for how long a patient is in a hospital, and how quickly a bed can be turned around between patients, but which is frequently determined by what time of day they are discharged. Patients can be kept in hospital over a weekend for example, instead of going home at lunch on a Friday simply because the hospital lab may not be able to turn around tests to confirm the patient is well-enough to go home. So for what might be a few extra hours of lab time, a patient and a hospital can incur three extra hospital nights: Friday, Saturday and Sunday.  Moving to fuller use of weekend working, plus at least 18 hour/day labs and imaging reduces these delays. As well, greater use of day-case procedures keeps patients out of an overnight stay; a good day case unit should run three day case shifts over the course of the day. This increases throughput and uses the infrastructure more intensively. Which does not reduce the high touch side of care, you just don’t need to be in hospoital for as long.

It is in the interests of healthcare vested interest groups to fixate on bed numbers as this is a simple measure, easy to cite, there is a finite number of them and fewer appears worse than more, so that presumably having more would be better and without more, dire things will happen to patients.

Such shroud-waving ignores that fundamentally more complex processes underpin poor use of beds, and hence treatment of patients. Improved pain management for example can chop a whole day of how long a patient needs to stay in hospital. Improving how efficient the operating theatre is can reduce how long a patient is under an aesthetic and so shorten the hospital stay — you don’t want to look at how poorly run operating theatres are, in terms of time management or surgical performance.  As a simple example, using a robot arm to hold the endoscopic camera rather than employing someone to do this reduces surgical time dramatically but how many of these are in regular daily use — how widely adopted is this technology, which is made in the UK?

Given that the UK’s four health systems have to look hard at spending, we should avoid a fascination with bed numbers, and indeed whether local authorities/municipalities can and can’t afford to do things. There is nothing stopping a well-run NHS Trust from investing in an effective free-standing step-down unit to handle the shift of patients into the community or contracting with the surplus capacity of nursing homes to provide skilled nursing care.

Yes, this doesn’t solve the whole problem, but it solves parts. Health systems are complex, and chipping away is often a rational strategy to avoid centrally planned chaos. The whole point of shifting the system toward more local decision-making is to enable creative solutions.

There is always room for improvement in healthcare, but having more beds does not always equal patients being treated particularly well or effectively or indeed being treated at all.  It is important that we keep this difference clear.

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