#shanenaz

Last year my pals and I cycled in The Galilee, Northern Israel, to raise money for Nazareth Hospital Paediatric Department. We raised over £50,000 but we could use more! Nazareth is the largest Arab town in Israel; the people are lovely, and the kids are awesome. Nazareth also treats kids in the West Bank of Palestine who have very limited access to healthcare. They need your help! Go to my sponsorship page to find out more and see what you can do! Maybe even join us in 2017..?
http://justgiving.com/shanenaz

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.