07 February 2016

We need to talk about Care.

So here we go. Tin helmet on, and underground bunker stocked for the next fortnight. Ladies and gentlemen, I am about to drop the c-bomb on you. CARE.

[it's an internet cat; copyright: whoever]
I suggest that the word "CARE" is one of those words in the English language that sits around looking cute and fluffy and meaning one thing, and then *BOOM* up it pops like Optimus Prime and transforms into some mega-killer bad-ass robot thing, and you're left wondering what the heck just happened there.

Before you go off thinking I'm uncaring, let's look at just a two meanings of this tricksy little word.

a/ CARE can mean to "nurture", to "provide services", to "look after", to "protect". That sort of thing. The "carer" is performing a function for the "caree". It's all very value neutral; in principle a robot could provide this sort of care.

b/ CARE can mean to "love" or to possess some sort of meaningful mental state towards the thing or person who is the object of such care. We recognise this and value it. If I care about you, it means that you are significant to me, in and of yourself.

Now it is entirely possible for both meanings of the word to coexist. When I care for my kids in the functional sense, I do it in significant part because I care for them in the love sense too. But, and this is a crucial thing, these are still two separate things. And in the world of marketing and public discourse, particularly around health, this quirk of language has allowed some very problematic confusions to arise.

We have companies advertising their a/CARE services as demonstrating their b/CARE characteristics. We drop the C word into professional language, such that nurses and doctors (for example) are seen as being "caring professionals". The implication is that your plumber somehow doesn't "care" (and this may or may not be the case), but that your doctor or nurse certainly does (and again this may or may not be the case).

It's probably not a direct function of this linguistic quirk, but I wonder if we're seeing in society an "outsourcing" of b/CARE to services that are designed to provide a/CARE. We as families have perhaps become so disconnected that we expect a/CARE organisations to do the b/CARING for us. We're quite happy to leave granny sitting for 6 months without a handle in her bathroom, waiting for some official organisation to come and install one, rather than getting out the cordless drill and installing it ourselves. And making granny a wee cup of tea and a biscuit and sitting down with her and telling that we actually b/CARE about her, and want to know what else we can do for her.

Maybe it's easier to rail against the Health & Social a/CARE Trust for being so un-b/CARING as to not provide a rail as part of an a/CARE package, which would at least show that they b/CARE, and that our stroppiness is sufficient for us to show that we b/CARE, rather than actually demonstrating our b/CARE by delivering some a/CARE ourselves, pro bono. [If you kept up with that, congratulations!]

So what is my point? It's this. If you b/CARE about someone, tell them. Show it. Do something for them. By all means if there are deficiencies in their a/CARE, highlight that, and try to get something done about it. But we should all consider what we, as members of society, can be doing to provide some a/CARE for those around us also. Yes, we a/CARE by paying our taxes, but we b/CARE by actually rolling our sleeves up and doing something for people. Making someone a cup of tea. Picking up that crisp packet that some twit has tossed out of their car window and putting it in a bin. Fixing a lightbulb for the elderly gentleman next door, and running the mower over his grass from time to time.

And maybe promoting the development of a society where every single minute piece of a/CARE doesn't have to be allocated to a government body, but where it can emerge as a normal natural function of a healthy society where we actually do b/CARE about each other. Maybe then we can afford a Health and Social a/CARE system that is fit for the future.

06 February 2016

An #EHR4NI - towards a regional integrated digital health resource

"Electronic Health Record" - a phrase to strike fear into the stoutest of Clinical and IT hearts, especially if used in close proximity to the word "implementation". There is no doubt - let me make that very clear - that paper-based clinical records, and multiple disparate computer systems for the handling of data relating to patients, pose a significant barrier to the delivery of excellent clinical care. It is not that the doctors, nurses, AHPs etc actually delivering the care (we may come back to that "c" word at some point in a future blog, because it's a tricksy wee fecker that doesn't always play by the rules) are not trying their best, but we need to recognise that when we are dealing with patients in the health system, the outcomes are based more on how that system operates in real life rather than the noble intentions of practitioners, managers or even (shudder) politicians.
"Are you half wise?"

In Northern Ireland the majority of clinical systems coming into direct access with patients, at least in the hospital sector, are still based largely on paper charts. The sheer volume of data that is often captured in these charts is mind-blowing. But it's one thing to capture data; it's another to put it into a format where it can actually be used to deliver benefit. And the sad reality is that the more data we capture in paper based systems, the less useful it becomes.

A patient with multiple comorbidities or frequent contact with the health service over years, or who has even had one episode of being very unwell and needing a lot of medical or surgical care, can end up with a huge collection of notes, and the chances that anyone is going to be able to go through all that and distil the valuable information that will make a real difference in their next interaction rapidly decreases as the amount of paper piles up.

So computer based records would be the solution here? Not so fast, my intrepid coder friend - while in principle computerisation of medical records can be very useful, experience across the world has shown that if it's not designed and implemented properly, we can end up with a worse situation than we started with, as well as a gargantuan bill and some very angry people.

I need to be clear; the solution most definitely does involve computerisation, and it most definitely does involve creating a digital health record around our patients. But this needs to be done properly, and there are a number of areas that need special attention when we are embarking on such a trip - otherwise it becomes a trip-up. These have been well rehearsed before, so I'm not going to go into them in detail; suffice it to say that they involve issues with the system itself, the engagement of the supplier(s), the engagement of the staff who will be using the system, and how the system itself interacts directly and indirectly with the patients - those receiving the "care".

Northern Ireland already has experienced quite stellar success with its implementation of the NI Electronic Care Record (NIECR). This is essentially a unified portal allowing clinicians to access much of the information they need to deal with a patient via one single login. The change from the old days of multiple logins and over-reliance on the paper chart has been almost universally welcomed with superlatives of praise. My view is that this project succeeded so well because a/ this was a very juicy piece of low-hanging fruit; b/ we had a great team of people who really understood what needed to be delivered; and c/ we were able to achieve high levels of clinician involvement at an early stage of the process. This was a system designed from the coal-face upwards.

But it's a limited system - for example, there is very little information I as a doctor can input directly into the NIECR. I can't book or change appointments. My patients can't fix errors with their demographics or message me from home. It's just, basically, an electronic window into a subset of some of their clinical record. That's useful (very useful!), but it's only a very tentative first step. We need to move forward.

There are multiple potential ways of doing this, and several of these are being considered right now. Whatever happens, I want my patients to be able to interact with their information, to message me, to book or change appointments, to view their results, to access health advice and educational information. I want my patients' radiology and labs to be integrated with their inpatient, outpatient and GP information (and community information too). I want to be able to conduct my clinics and generate letters etc without the need for any paper. Similarly for ordering investigations or prescribing medications. Such systems exist, and I'm pretty sure I can envisage this operating in a Northern Ireland context.

But how do we sell this to the population? How do we get buy-in from society at large? How do we ensure that it is our people - our greatest resource - who join us in this journey of specification, resourcing, procurement, implementation and ongoing use? How do we give ownership to NI? This was a question asked at a recent workshop I attended. Various abbreviations have been tossed around: EHR, EHCR, EPR - all the usual.

Then came one classic NI suggestion from the floor that everyone chuckled at: "It's Our Wee Record, So It Is." And everyone immediately passed it over to think on other contenders (I suggested "NICRS - Northern Ireland Care Record System" - to be pronounced "knickers" of course), before parking the whole exercise, because in reality we had more important matters to discuss.

But as I think about it, I keep coming back to "Our Wee Record". In my mind, this perfectly sums up what we want. It has to belong to us - the people of Northern Ireland, clinicians, patients, administrators. It's our wee record - it's a familiar thing, something we love, like our wee phone number, our wee debit card, our wee driver's licence, our wee first child, our wee signature, our wee PIN. (If you're not from NI, this will leave you utterly bemused - it's a Norn Iron thing). And since it's OURS, we do it our way. We're not Brazil, we're Northern Ireland. This, dear planet, is how we roll. And when we say we're going to implement an electronic care record, we acknowledge the excellent steps made in nomenclature across our beautiful blue marble, but, thran hallions that we are, we're going to make our call. If we do this right (and make no mistake - it is my forthright intention to make sure we DO do it right), we can be an example for other regions, and export our learning. Because for a population of 1.8 million, that's what we've been doing for years in the fields of science, engineering, agriculture, literature, art etc.

The success of this project will hinge as much on the vision and buy-in as on the technical solution and its financial resourcing.

It's Our Wee Record, so it is.

05 February 2016

Biking the Galilee

Let's do that again!

Legs legs legs.
More details will come in due course, but I am going to be cycling in the Galilee in November 2016 to raise money for the Paediatric Ward at Nazareth Hospital. This shot is from my previous cycle ride in Jordan and Israel back in 2009. That now seems like such a long time ago, but (as I am massacring my 40s like George RR Martin) it only seems like yesterday.

This time the focus of the fund raising is very clear - the Paediatric Ward in the hospital needs some serious redevelopment. This hospital cares for much of Northern Israel, particularly the very large Christian and Muslim populations who live in and around Nazareth itself.

I spent a couple of months as a medical student working in Nazareth and travelling around Israel, and I really fell in love with this crazy, gritty, intense town. This is where you'll find the best food in Israel (sorry, Tel Aviv), the best music, the most interesting people. This is Arab Israel at its best, but also where we in the West can have the most positive effect.

The hospital founded in 1861 by Dr Pacradooni Kaloost Vartan has been delivering care to the Galilee region for over 150 years - the oldest extant hospital in Israel (and possibly the Middle East).

So if you want to support what we're doing, please come on over to my fund raising page: https://my.give.net/shanemckee - please also share the link, and keep coming back to see how we're getting on! (Yes, I will be dropping a bit of scandal as we go on).

26 January 2016

To EHR is human...

...and to really screw things up, you need to implement a massive programme of change across a complex and dynamic sector without adequate staff engagement and without working out exactly what it will cost you.

In most hospitals in Northern Ireland (and indeed in many care settings), clinicians still rely on paper notes. The dream of "going paperless" seems very remote. Despite the spectacular success of the Northern Ireland Electronic Care Record (NIECR), many in the Health & Social Care sector are deeply suspicious of computers, and not especially keen to move to a system where the paper is replaced by screens.

There are good reasons for this. We peer across the Irish Sea at the fiasco of the NHS England "Connecting for Health" initiative, in which billions of taxpayers' pounds were wasted trying to get big corporations to devise One System - a megasuite - to pretty much manage the whole of health IT in a "replace all" model.

[Altnagelvin Hospital's new South Wing. Photo: Belfast Telegraph]

Not that such models are necessarily doomed to failure - several large corporations (mainly US-based) have made a very successful business from selling broad-scale electronic health record (EHR) systems to hospitals and healthcare organisations. This almost inevitably includes getting doctors, nurses, allied health professionals, administrative staff and others adopting the company's way of doing things. And that might not be a Bad Thing in itself - after all, the company may rightly pride itself on bringing a wealth of learning about processes and flow from its previous customers, so if you change to the Company's Way, you will be changing to a tried-and-tested model of lean efficiency. But if the local change process is managed badly - or if you haven't decided exactly where it is you want to go - you could end up spending hundreds of millions of pounds and getting thousands of people very disgruntled indeed. Nobody needs that.

So let's back up a bit. What is an EHR in this context? What IS Shane talking about?  Essentially an EHR is more than a record - it provides an electronic framework for managing patients details as they proceed through the health system (hospital, community, GP etc). As such it may include patient details (demographics); scheduling of appointments, operating theatre lists, ward lists etc; we'll obviously want to have clinical noting in there (do away with the paper charts!); documents management; medicines management and e-prescribing would be great (let's make sure everyone is using the same medicines list); observations; laboratory test ordering and results; radiology ordering and images; and more besides. We'll clearly need ways for clinicians (by which I mean doctors, nurses and associated health professionals) to access the system; we'll need to let the admin people in; and in most forward-thinking approaches, we need ways for patients themselves to access and interact with their data (patient portals). Because it is THE PATIENT'S data. Then there is the need for public health and other aspects of population-based data crunching to ground good decisions about resource allocation and response to health needs.

There are other elements too - clinical decision support; terminology repositories (to make sure we are all speaking the same language); alerts, coding, and (particularly in the American scenario, which is where all this started - and it shows) billing. This is not an exhaustive overview - I've rattled this off the top of my head and I could probably come up with another ten or fifteen core functions if I wanted to make this post even longer and less likely to be read.

So if your head is not reeling already, it jolly well should be, because we are talking about a very complex set of requirements. If you're a health service that is still very much paper-based for many of these functions, and the computer systems that you do have don't talk very well to each other, you're likely to want to buy one of those big snazzy systems that offers a solution to everything.

But hang on a second. Do not - and I repeat, DO NOT - underestimate the scale of the challenge of change. Implementing a do-it-all system is a perilous process, and while some organisations have managed this very well, and the vendors of the systems are themselves very skilled in their processes, the path to EHRvana is littered with the shattered remains (OK, I'm over-egging this a bit) of organisations which failed to plan and implement effectively. This is going to require a LOT of resource, in terms of raw cash and most importantly people who have the energy and leadership to pull the rest of their colleagues over the line. For some organisations this is the right approach. But it is not the only approach.

Let's step back a bit. What exactly are we trying to achieve here. What is "EHRvana" anyway? It turns out that what we're really looking for is a way to have a single "source of truth" about our patients - a pool of data - that is accessible to us and our patients at the point of care and wherever else we need it. It needs to be secure to protect confidentiality and confidence. It needs to be accurate and up to date. It needs to be rich, in that it should not omit anything important. It needs to be structured in such a way to allow smart queries to deliver relevant results back, without drowning the user in useless stuff.

If I'm a cardiologist, I want to see information on the patient relevant to my job. Likewise if I'm a podiatrist, I need my own view. Or a geneticist. Or a nephrologist. Or an appointments clerk. The requirement is not that we all use the same interface, but that we all dip into the same data pool and extract the information that is relevant to us. And some of our data requirements will overlap. And the patient will want to see snippets of them all.

So an alternative model might look like a single common data structure (like a big database that contains everything), supported by various interfaces (in technolingo these can be referred to as "APIs") that do the data depositing, querying and processing. On top of those layers, instead of a megasuite, we may have different applications that provide the user interface, and they talk to the APIs to read and write data from/to the data structure.

If we break things up this way, it does a couple of things. One, it opens up the market. Instead of being forced to go with the big boys, we can have smaller software vendors competing in a much more accessible space. If we need a cardiology system, we buy a cardiology system; we don't need to buy an entire acute specialties suite. Secondly, it can rapidly speed up product development, in that interfaces can be tailored to local needs, or even new emerging needs that weren't considered in the early days of the project.

OK, Dr McKee, you may ask, what is the best solution for Northern Ireland? I admit to being something of a newbie to this arena, but one principle looms large in my thinking. We have an opportunity here to do things OUR way. We're planning for the next 10 years, and trying to deliver high quality health care to a population of almost 2 million. We're trying to do that within constrained budgets. We do have fantastic patients. We have excellent healthcare personnel. We have strong relationships built up over many years across our health and social care sector. We have the experience of working with a system (NIECR) which delivers relevant clinical narrative right to the bedside or clinic.

We need to decide what Northern Ireland is about. Are we following the world, or do we want to lead the world? Can we design a patient-centred approach to healthcare data that allows us to bring different services on-stream, to maintain the leadership and drive over a long period, to deliver value for money to our taxpayers, to provide workable models for others to follow?

I believe we can. And in a future blog I'll lay out some of the steps that I think we need to take in order to do that. Some of the strategic partnerships we may wish to engage in to ensure that we get the best health results possible for our patients, and how we can provide a stimulus to the knowledge economy that will carry Northern Ireland forward in the coming decade.

Stay tuned!

19 October 2015

Fixing the Earth: Piece of Cake

[Hope in a Changing Climate]

We've done a lot to this planet to make its future habitability somewhat precarious. If printed out, the amount that has been written on the hows, whys, wherefores and whereuntos would probably itself contribute significantly to climate change. But is there a way back? Is there a path we can choose that can restore our Earth's vast areas of degraded land, that can improve food production, that can improve incomes and support economic stability? Can we find hope in a changing climate?

If you're one of the many people who has given up that hope, this documentary by environmental researcher and film-maker John D Liu may just be what you need to help you reassess the situation. If you feel you can't make a change, or you don't even care that much, perhaps you've let the blinkers drop down over your eyes. But lift them up, because all is not lost.

The example of the Loess Plateau in China - a harshly degraded area the size of Belgium - shows that it is possible to design, install and encourage passive natural systems that can restore landscapes, with effects local, distant, and possibly even global. Incomes for local people increase, quality of life increases, agricultural productivity increases, rainfall (yes, rainfall) increases - and all the while the system locks carbon up into the cycle of biology and into the very soil itself. The Loess Plateau project, funded by the World Bank Institute, has been in operation since the 1990s, and has achieved astonishing success, indicating that restoration is possible, and in the process, climate change itself can be significantly mitigated, or even reversed.

In many ways we've known the techniques for years - careful water management, minimising run-off, slowing it down, spreading it out, sinking it into the ground (thereby replenishing wells and aquifers), growing plants to shelter the soil, slow the wind, prevent evaporation - these are all well established techniques, although the permaculture techniques of putting them all together may require something more than local enthusiasm.

This is where a heavily top-down state like China can flex some muscle, but in the documentary John shows how other areas, such as Jordan, Rwanda and Ethiopia have taken steps to rebuild the paradises (yes, I did say that) that once existed where centuries of relentless exploitation have created desert.

In a recent Facebook post I cheerfully and cheekily suggested that the problems weren't all that hard, and John immediately protested that I was underestimating the challenges involved. Not for the first time in my life, my Irish sense of the ironic did not translate well onto social media. Because John is absolutely right - what needs to be done is indeed hard. And it's hard in the John F Kennedy sense, that this is why we choose to do this and the other things.

But you'll note that it's not impossible. It has been done, so it can be done. In the McKee Lexicon, something had better be damn near impossible before it earns the label "hard". So I'm going to go with "challenging". You've watched the documentary, so you'll appreciate some of these challenges. As it turns out, these are applicable to a large number of things, and as so often in life, if you want to achieve something amazing, you need to meet those challenges head on. Often planning will help, but sometimes you need to do it on the fly. But let's have a look at some of these challenges - this list is not exhaustive.

We're often limited by our lack of vision. We think that "challenging" means "impossible" - or we make it so. We lose sight of the ultimate goal - or we can't even conceive an ultimate goal. We lower our targets, we accept something less than what we really want. Lifting our vision can be hard. Even when we have a vision, we have to go out and transmit that to others, requiring communication and visualisation skills that we may have to improve.

Vision itself is pointless unless you also have a plan for achieving it. Many ideal scenarios founder on the rocks of reality because you can't get there from here. However, very often what is required is thoughtful study of the problem and, with the appropriate application of our acquired knowledge, we can plot a path to where we want to get to. As Matt Damon's character Astronaut Mark Watney in the blockbuster movie "The Martian" puts it, "I'm gonna have to science the shit out of this." More prosaically, in the Loess Plateau, the designers put forward the solution of placing a "hat" of trees at the tops of the hills, a "coat" of terraces on the slopes, and "shoes" of dams in the run-off channels. A design-based solution, and a brilliant metaphor to tie that design to the vision, allowing the highly-sceptical residents to relate to what they were being asked to buy into.

$300M is not to be sniffed at - that was the grant awarded by the World Bank Institute, and a considerable amount was injected by the Chinese Government, and I imagine some other NGOs were involved too. Paying for land, labour, compensation, equipment, plants and seeds and many other items - you could argue for an area of that size it's pretty cheap, but you don't come up with that sort of cash without some serious commitment. And you don't come up with that sort of cash unless you can also sell the vision in point 1. You need fiscally-minded people who are committed to the project. You need due diligence and careful financial governance. You need transparency, equity and the prospect of paying back your investors.

Here's where the Loess Plateau job got really hard. The people who had lived in and farmed this ravaged land for centuries had to gang together and put in some serious work. This is not a trivial thing. John's film shows how they grabbed tools and physically dug the terraces out of the steep slopes. How, with the aid of skilful landscape designers (operating at a level far beyond the small-scale garden designers we employ to beautify our back yards and neighbourhoods), they planted trees, fenced off areas from livestock, built dams to check water flow - this was civil engineering on a massive and truly civil scale. They had to be paid, and (perhaps crucially) paid better than they could make from farming the land as before.

You can't achieve change overnight. The Loess Plateau has taken almost 20 years to regenerate to its current state, but (and this is the important point) it's still changing, still improving. Like an ion drive rocket engine, the acceleration rate is slow, but it's steady and prolonged and keeps building. The important thing is to set out in the right direction and commit to spending that time to get things right.

There are of course many other challenges, and as you can see, the ones I've listed aren't even mutually exclusive. Is there one principle which is paramount? Perhaps. This gets back to my exchange with John D Liu - it's VISION. Vision should be easy, right? It should be straightforward to explain the benefits of change to people, and they'll jump on board, and all those other issues will get sorted out along the way, right?


Vision is hard. Vision is so susceptible to the corrosion of cynical small-mindedness, failures along the way, direct opposition, fatigue. But it's also exquisitely rewarding. We need people to grasp the vision, to get out there, and to transmit it. It needs to be a meme infecting other brains. And it's the meme that, if successful, might just save civilisation, restore lands to productivity, and lift people out of poverty.

As it turns out, terraforming the Loess Plateau can be easier than changing the landscape between our ears.

15 September 2015

What will it take to get us to Mars?

A novel and an upcoming movie about an astronaut stranded on Mars may have injected a considerable dose of momentum into actually making a manned Mars mission happen.

It's confession time. I am a massive fan of space. OK, anyone who knows me is not surprised by this. I was in utero when Neil Armstrong and Buzz Aldrin stepped onto the lunar surface; as a youngster my bedroom walls were adorned with posters of the Apollo crews, shuttles, landers and planets, and I read everything I could get my hands on. My child-like view was one of optimism and progress. I devoured books by Arthur C Clarke, Robert A Heinlein, Isaac Asimov - I was sure that humanity's future lay off-Earth, and that there was something indomitable about the human spirit that would take us to the stars.

Now in my 40s I am thrilled that humans are living continuously in space; I still regard myself as fortunate that at least some humans were on the Moon in my lifetime, but I feel that we should still be there, and we should have moved beyond the Earth-Moon system to Mars and the asteroids - that's where all the fun took place in those books I read. And the fun wasn't unalloyed - it came mixed with danger, tragedy, terror (sometimes including aliens, but let's set them aside for now) - it represented adventure in its truest sense. 2001 came and went, and we don't have anyone orbiting Jupiter. Gerard K O'Neill's mighty space colonies remain unrealised. We send our robots to the planets and to comets, and they send back stunning pictures of worlds that are diverse, dangerous, exciting and beautiful. And we want to go there.

Andy Weir's best-selling novel "The Martian" is something new. Or maybe it isn't. It's an awesomely intelligent thriller, where our hero Mark Watney is an astronaut stranded on Mars, while his departed crewmates and the people of Earth think he is dead. Mars turns out to be a somewhat challenging planet to stay alive on, and, while he waits for the next planned mission in four years, Watney has to cobble together his meagre resources to survive. As he says, "I'm going to have to science the shit out of this."

And science the shit he (literally) does, growing potatoes in his poo, among other things. He has to get rovers and radios working, make water, conserve oxygen, repair his habitat - all the normal stuff for a smallholder on Mars. He also has to figure out how to communicate with Earth to see if there is any way he can be rescued, or work out whether he is doomed to die (properly this time) on a desolate frozen planet that seems intelligently designed to kill him.

The book is pacey and exciting; it's well written in that it avoids overloaded prose, and in some ways doesn't paint pictures of the Martian landscape, other than treating it as a practical hazard. This turns out to be a good thing - by now we have grown used to the incredible photos beamed back from the superbly successful rovers Spirit, Opportunity and more recently Curiosity. We know Mars is beautiful and terrible, and we don't need Andy to waste too much paper telling us that - tell us how Watney is going to solve his problems, dammit! And this he does in full-on geek style.

This works. At least, it works for geeks like me. The Martian has been called Macgyver on Mars, and that is pretty apt. But I think that here we have something more significant than that. I'm even going to stick my neck out and suggest that The Martian may end up being a work of enormous significance. For one thing, it is an unashamed blast of geekery that takes us right back to the giants of sci fi before things started getting all mushy and sentimental, before psychology and even paranormal nonsense started polluting our clear positivist stream.What we have here is a hero. A geek like us geeks. He doesn't give up, he uses this brain that evolution has worked so hard to give us, to stay alive, and the whole of Planet Earth sees itself in him and is rooting for him.

In this book, there are no bad guys - there are some bad decisions, but everyone is at heart decent. The bad guy is Mars, but even then, that's just Mars being Mars. It's good clean heroism, good clean fun, and has come at a time when people need to be thrilled; we need to look up at the night sky and see our home. What is going to get us there is precisely the sort of attitude that suffuses The Martian.

In a few short weeks, Ridley Scott's film of The Martian will hit the screens, with Matt Damon playing our hero (and he's a hero, OK? That's the point). The trailers have me hooked already, even though I've read the book. And the preliminary reviews have been very favourable. This is all to the good - there have been some real stinkers of Mars movies in past years, and something that can capture the spirit and power of Andy Weir's book will surely help inspire the generation that ultimately will make that voyage. NASA has laid the roadmap for the "Journey to Mars", but the most perilous parts of that journey lie in getting funding through Congress and winning resource from international partners. This will have to be a journey that Planet Earth undertakes, not just one country.

The privately funded, and still very much Earth-bound, Mars One Project plans (at least on paper) to establish a human base on Mars in the 2020s using funding from media buy-in and angel investment. So far there is deep scepticism among many that such a project can work, and, despite my positivist nature, I don't see how they can raise the cash to make it viable. But with The Martian, book and movie, the Red Planet is going to get a lot of exposure. Elon Musk, he of Space-X, Tesla and Solar City, has said that he wants to die on Mars - just not on impact. Maybe Bas Lansdorp from the Mars One was right. Maybe the way to build the impetus to actually land humans on the Red Planet is, to paraphrase Mark Watney, to media the shit out of this.

10 September 2015

Precision Medicine is here. Now. So let's use it.

New tests come along in medicine all the time. Our machines get bigger and faster. The range of things we can test for gets wider. Patients find out about new developments, and quite reasonably wish to benefit. Companies identify new biomarkers that can inform management or act as a marker for disease progression. The last few years have seen a veritable storm of progress as the Christmas tree of patient management becomes adorned with ever more sparkly, impressive and costly ornaments. But the underlying tree remains the same.

We doctors are conservative creatures - while we wax lyrical about change and progress, deep down we like to keep things the way they have always been. Yes, this new thingy is amazing, but it won't change that fundamental way we like to do things. Yes, our new knowledge of the collywobbles will radically change things, but it won't really radically change things - at least as far as our comfort zone is concerned.

I'm not alone in thinking that this sort of attitude is holding us back. Let me give you an example of a situation where lack of imagination and inherent conservatism is not just holding back progress, but wasting loads of money as well as patient time. But first a little background.

What you may not know is that when a new test comes along that can save a lot of money, it very frequently saves money for someone other than the person carrying out the test. So if I'm a GP who gets a lot of patients in with skin disorders, I might refer them to a dermatologist who examines them, carries out a load of tests, and makes a diagnosis. So if I refer 100 patients, and it costs me £50 to see each one, that means that my dermatologist colleague has 100 patients on her books that she has to examine and test. This process costs, say £200 per patient, including outpatient costs. Maybe 90% of patients can be reassured (after waiting on a waiting list to be seen for god-knows how long) and sent away with a prescription for some moisturising cream. 10% go on to get some more expensive treatment that costs £1000 per patient. Overall costs: 100x£50 + 100x£200 + 10x£1000 = £35,000, not including patient wait: £350 per patient.

Now, say my dermatologist friend develops a new test - the X-Test. The X-Test costs £50 (ouch, say commissioners - that sounds expensive), can be carried out in the GP surgery, and means that 80% of those patients can be immediately discharged, and only 20 need to go on to the dermatology list for further assessment. Now the costs are 100x£50 + 100x£50 (for the X-Test) + 20x£200 + 10x£1000 = £24,000, i.e. £240 per patient. That's a huge saving of £11,000 and the patients don't have to sit for ages on a waiting list. Brilliant, isn't it? It's almost a THIRD less expensive to manage patients along this pathway than the previous pathway. What health commissioner in their right mind would not want to do this?

Here's the problem. The specialists and the commissioners never see the savings, and the people paying for the service at one point in the path are not the same people paying at another point. The dermatology list is so long that there always remains some waiting activity to fill in the slack, so they're working as hard as ever, and the money never appears back on their bottom line. The patients are still pitching up to the GP, and now the poor GP has additional costs of 50% more than they were before! So it doesn't get approved. Yet overall the money spent per patient would be greatly decreased.

Can you see the issue? This is the standard way things operate in the NHS where budgets are allocated to silos (specialties, departments, health sectors, directorates), rather than having "the money follow the patient". Sure, we all pay lip service to that concept, but in reality it does not work nearly as well as it should. If we set up internal markets, it creates a morass of bureaucracy that turns potential savings into additional expenditure (a charitable term for "waste"). We set up criteria and proformas that get in the way of doctors and nurses doing their jobs. We audit pointless measurables simply because they're measurable, to see how they stack up against guidelines and ideals, rather than using data to get a feel for how the engine of health care is ticking over.

That's not to say that audit is a bad thing, however much audit in healthcare is poorly targeted and done "for audit's sake". Rather, what we need are meaningful analytics that help health care professionals and management get a feel for what is actually going on in their services, but much more importantly, how things are working out for the patients across their interaction with our health service as a whole.

The toy example I have given above, however, is when it's working well! What actually happens in practice is much worse, and comes back to what I mentioned up at the top. In practice the patient pathway remains much the same as it was before, and the X-Test is bolted on in such a way that it is in addition to the other elements of the path, rather than a lever to change the path. So for example the 100 patients get the X-Test and they're all referred to dermatology anyway. Then they get all the additional investigations, whereupon the welter of information is assessed at the end of the process, and only then is a decision taken. Maybe it allows some streamlining of patients at that stage, but by now the full potential benefit of the test has been squandered, and we have wasted copious amounts of patient time and taxpayers' money.

A real world example from my own area of practice is a technique known as microarray comparative genomic hybridisation (array-CGH or aCGH). This is a test that will pick up small regions of imbalance in a patient's chromosomes. The most common reason for a geneticist doing this test is in a child with learning disabilities or congenital abnormalities, and the pickup rate is about 15%. However before these children get to my clinic, they all (in an ideal scenario) have a karyotype (where we look at the chromosomes down the microscope - it's laborious, misses lots of problems, often non-specific, but it's relatively cheap) and maybe a Fragile X test (Fragile X is a fairly rare cause of learning disability - not "common" as some of the old textbooks used to tell us). Between the chromosomes and Fragile X, we'll maybe find a cause for a child's disability in 4% if we're lucky. So this 4% get referred to Genetics.

However a large proportion of the other 96% also get referred to Genetics (usually from community paediatrics), in order for us to carry out the aCGH test to make sure we're not missing anything. This includes children where, if the array is normal, the likelihood of finding a cause is very low - and we know that from the outset. But because a proportion of these kids will have an aCGH diagnosis, they get the enormous privilege of sitting on a long waiting list, then seeing a geneticist, only to get another test done and wait several weeks for the result of that. Our commissioners get cross because this new test which we've bolted on costs a fortune (actually only about £120 per patient, but hey austerity).

The solution is obvious - stop doing karyotype and Fragile X in community paediatrics, and roll out the aCGH test at that point. This would result in fewer children being referred to Genetics, the ones that do get referred get seen quicker, the results of the aCGH can be used to target their management much more efficiently, additional tests that would otherwise be carried out while they are waiting are avoided, anxiety is decreased, etc etc.

So to have the desired effect, we need to change the pathway. But remember our old friend the siloed budget? Yes, if we bring in such an obviously good change, it is going to cost more in the upstream part of the process, and although the overall costs per patient are much lower, and the benefits per patient are readily apparent, the savings (and they are substantial) get swallowed up or rendered invisible in the throng of unrelated problems further down the stream. So commissioners don't want to fund that new-fangled nonsense because they don't get to benefit.

But what if - what if - we had the courage to think outside our little boxes, to look at the overall patient experience as what we're really trying to improve? What if we realised that our pathways are part of the problem, and all we're doing is putting more ornaments on the Christmas tree? We need to invest in the disruptive, and carry that through. In this case, I mean we need to dramatically expand aCGH out to community paediatrics and change the pathway. We're making an ever-more gaudy and expensive spectacle, but not achieving the benefits we really want to see. If we're serious about reaping the benefits of medical progress, we have to throw out a load of the old stuff. De-clutter patient pathways, design them rationally, and in conjunction with our patients. Use the science of personalised medicine to properly personalise it - we're supposed to be helping our patients in decision-making processes. So let's actually make some decisions and get streamlining. Yes, it may cost more within some "silos", but the overall gains are there to be grasped.

The way I tend to think of it is that the aim of stratified medicine is to do exactly that - stratify the stream to achieve laminar flow. Remove the eddies and turbulences that are making our patient journeys more of a white-knuckle white-water rafting experience, rather than a more comfortable cruise to exactly where they want to go. Holding back is a false economy, it's costing us more money and causing our patients harm.

Specifically (in case I have not been clear enough) invest in precision medicine and genetic diagnostics, and have the guts to use this information to redesign and prune patient pathways for improved outcomes and patient satisfaction.