Optimist On Tour poster

Hello all. Here is the poster for the next Lancaster Skeptics in the Pub – please feel free to print this out and stick it wherever you’re allowed.

Remember, this has had to move to Monday 25th, and will kick off slightly later than usual, at about 8.15

Thanks, and see you there!

Mark Stevenson poster

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Martin Robbins poster

Hello all,

I have done the new poster for the next Lancaster Skeptics talk with Martin Robbins about Bad Science in Africa. Please feel free to print this out and stick it up anywhere you are allowed! As ever, I am finding it difficult to get the time to do this myself, but will try to get as many out as possible over the next week or so.

I saw an earlier version of this at London SitP, and am really looking forward to this. This is upstairs at The Park Hotel, Lancaster on Sunday 27 May.

See you there!Image

Facts as the basis for media regulation in health

Today I went to an event organised by the Democratic Society to discuss regulation of the media. This is the penultimate stage in their ongoing project, whereby a number of writers have contributed posts on particular aspects of the subject. I wrote a draft piece making the case for change, based on the harm arising from the misrepresentation of science in healthcare.

A lot of interesting discussion was had around how we can encourage the public to participate in the production of the media, how the culture of journalists can be changed for the better, and what oversight and regulation can and should be put in place.

One point of discussion today was the basis on which cases presented to a regulator should be judged. To me, the obvious imperative is to ensure that what is reported is true, or at least not clearly known not to be true. I understand that this is a difficult criteria on which to legislate, for a number of reasons. I also know, having been to a couple of talks by legal blogger and onion knower David Allen Green, that the basis of British law is not the finding of facts, but the determination of liability.

If my understanding is correct following todays discussion, the current system for complaints in the press arena, outside of clearly illegal activities, is based largely on the harm to the individual complainant. The complainant has to demonstrate that the particular story was either an invasion of their privacy, harmed their reputation through implication, or made false statements about them. This is a practical solution to the difficulties of resolving disputes between parties, and could be made to protect parties of lesser power and wealth, although it currently does not.

It seems that much of what was discussed revolved around the manipulation of public perception and the reporting of private lives of individuals. What I feel this misses, though, is the direct protection of the public from directly harmful untruths; it only protects us from untruths that are likely to be harmful to parties that are able to bring the kind of action required, and even then only minimally. I feel it is very important to protect people from wider, currently largely unchallenged untruths that can lead to people making the wrong healthcare choices, and causing unnecessary suffering or death.

It is clear from the large sets of scientific data that there is no link between the MMR vaccine and autism, that drinking alcoholic increases cancer risk, and that homeopathy does not protect against malaria. To say otherwise is both clearly factually inaccurate, and dangerous. My position is that publications that make claims like this should not have to be challenged by an individual that has been directly and demonstrably harmed by that particular article, but should be made to retract claims that are counter to the body of evidence and everything we have learned about healthcare.

Exactly what the mechanism for this would be I do not know, and I am not sufficiently versed in the formations of political and regulatory bodies to speculate on the best fit. However, I am unsure where the significant difference is between the case being brought on the grounds that the claim is wrong or that the claim is potentially harmful. If a claim in the health field is harmful, it is because it is factually wrong. If a healthcare claim is factually wrong it is therefore potentially harmful. These two cannot be clearly distinguished in this instance, as the potential to harm is a necessary property of incorrect health claims – if it doesn’t harm relative to alternative claims, it is not wrong.

What I want to be clear about, though, is a key distinction I would draw. I am convinced that people should be protected from dangerous untruths and that to allow them to be printed unchallenged is a threat to public health, but I do not wish to suppress innovation, new ideas and challenge within science. As long as the facts are presented fairly and accurately and the distinction between fact and speculation is clear, I am positively happy to see people thinking about new forms of treatment based on cutting edge technology, genetic discoveries or refined drugs. It is through innovation and challenge that we make the great breakthroughs.

The best ideas should then be tested thoroughly using appropriate trial designs, to see what is likely to work. These tests will produce a new set of data to add to the pre-existing, on which further theories and speculations can be based. Once again, though, having done the testing, it should be required that the results are accurately described – the facts are the immutable foundations on which any theory should be built. Often several competing ones can be reasonably developed, at least until further testing discriminates between them.

However, in the more developed areas, there tends to be little room for controversy in the evidence, as these controversial areas are the first to get further research to provide clarity on what it is that is happening. The simple facts of the trials to look at the supposed link between MMR and autism are available – no well designed study, of which there have been several, has found evidence of a link. This does not logically prove that the link is not there, but provides a very robust level of evidence – certainly greater than much evidence used to convict people of crimes.

Based on this, I believe the statement ‘there is no link between MMR and autism’ is acceptable as a reasonable summary of the evidence, whereas the statement ‘there is a link between MMR and autism’ is not. It is inaccurate and dangerous, and is exactly the sort of statement that any worthwhile media regulator should be tackling.

The details of how a particular statement is deemed a reasonable summary of the evidence is not clear to me in all cases. Those areas that have live, genuine scientific debate should be allowed to work themselves out through the scientific discourse. Individual facts resulting from experiments should of course never be manipulated or misrepresented, but there will be occasions where there is more than one summary of the available evidence that is reasonable, and the interplay between these is where the interesting science will happen. There is no crime in being wrong when it was a reasonable position to take based on the knowledge available, but continuing to promote a disproven hypothesis in medicine is dangerous.

All the above is simply an expansion on the famous observation that you are entitled to your own opinion, but you are not entitled to your own facts. I think more than that, the media are entitled to give us their opinion, but they are not entitled to give us their own facts. In many areas this is problematic, but in healthcare it leads directly to poor health decisions, and avoidable suffering and death. This must be a priority for a regulator.

Loneliness of the long distance runner

So on Sunday I ran the London marathon, raising money for MS Society, a charity that invests in research into possible treatments and cures for Multiple Sclerosis.

I had a place last year, which I got through the ballot. I had never really run before and wasn’t particularly sporty. I entered on a whim, largely because a heavily pregnant colleague was doing, and I thought that if she could do it surely I could. I trained pretty well, until about 8 weeks out when I tweaked something in my knee. When it still hadn’t sorted itself at 2 weeks to go I realised I had to postpone until this year, so I hung up my running shoes until about the turn of the year.

My training was a lot less than it should have been, largely due to working long days with an hour commute either side, and weekends being the only time I get to see my fiancée and therefore at something of a premium. I had gone to about 17 miles three weeks in advance, but had to walk the last couple of miles. I was pretty sure that I struggled because I was knackered, it was late at night, I hadn’t eaten well, and I’d run 10 miles the day before, and had covered a huge distance up and down stairs at work all week. But whatever the excuses you can make, failure to run your distance on the last chance for a big training run is really dispiriting, and made me nervous before the big day.

I didn’t find there to be a loneliness during training. I guess I was aided by the vast number of podcasts I listened to, so I was constantly learning about science and technology, getting riled by politics, or laughing at the comedy. I could start running and get lost in something wonderful, in a way that I think has only really become possible in the last few years. It also helped that when at home, I have some beautiful countryside to go through, and there is little more beautiful that clear winter sky.

I have never taken part in a big sporting event like this before, so didn’t really know what to expect. Of course, I had the images in my head of huge hoards crossing the start line, and saw that there were a few spectators at the key points. That didn’t prepare me at all for the number of people all the way round, the amount of noise they made, and the effect that would have on me as a runner. There were bands, some official and some spilling out of the local communities, every half mile or so. Thousands of people came and lined the streets holding out sweets or fruit for the runners, and cheered people on. Many of the spectators didn’t have a particular runner, but were just taking part in the event.

My favourite spectators were the young lads in hoodies, from the poorer parts of town that we went through. In everyday life I think I would probably be a bit intimidated by a group of surly looking youths, but those same guys with the same surly faces were high fiving runners, enjoying the event and providing really valuable support.

I don’t think I’ve experienced such a positive coming together of such a wide range of people.

My finishing time was 4:29:18, which was pretty much exactly what I paced for. I’m really pleased by that, although I think that with a bit of a training run I could improve, and with a real go I could probably take an hour or more off.

For the first 10 miles or so I was holding back, running just under 10 minutes a mile. I felt like running faster, and nearly gave in to goal creep. By about mile 14, my pace had dropped a bit going at a bit over 10 minutes. From around mile 21 to mile 25 I really struggled to keep my speed up, despite knowing just how fast I needed to go to get a 4:30 time. I can really see why people stop at this point, as while those last 3 or 4 miles don’t seem a lot from the outside, trying to force your legs to keep going when every fibre of your being wants to stop and rest is tough and 3 or 4 miles seems impossible. Those four miles were much harder than the rest put together. 25 to the finish was probably my quickest mile – I certainly belted the last 800 yards, knowing how close I was to the finish and the time I had planned.

One of the symptoms of the difficulty in those later miles, and probably one of the reasons I carried on, was the weight of the event I felt. The great majority of the people there were raising money for charity, and the number of vests that were dedicated to missed loved ones was huge. I was part of something that was honouring those that had suffered and died, and raising vast amounts of money to reduce this in the future. I had become, by accident, part of something massive, much bigger than the achievement of running alone. I got a bit emotional, and although I didn’t cry, I wasn’t too far off.

I’m sure London is very different in many respects from other, smaller, marathons, as you don’t get the same turn out for any others and there is not the same sense of scale. I imagine there is a real risk of loneliness if you stop running and have to walk four miles without support. But in my one experience, long distance running has made me feel more connected than ever to a huge number of people. We did something special last Sunday, and I feel inordinately proud for my part and for everyone else.

NHS, more fury, the media and activism

Oh dear, I’ve gotten quite angry again.

These last ten or so days have seen some massive stories – let’s just describe a few of them.

Look at all that. That’s just the stuff I thought of while eating my noodles at lunchtime, and each one is massive.

And what have been the two stories of the week? VAT got standardised to include pasties, and there isn’t a strike happening. That’s right, 20p on a £1 food item and people going about their regular job is bigger than everything above.

I have seen it suggested that the pasty tax accounts for somewhere between 0.02% and 0.03% of the economy, which, given the recent budget and the cost of healthcare is peanuts. We know that Cameron either lied or got confused about eating a Cornish pasty at Leeds. I can easily imagine misremembering where and when I ate a pasty, so I’m happy to be charitable on that. Hell, even if he lied I’m not particularly bothered as it’s so inconsequential, and we know he lies about much more important things already.

The strike that was discussed was, on the face of it, horrifically handled, initially by Francis Maude ably supported by the tabloid press. Telling people to top up and to keep some in a jerry can at home, to be on the safe side, is the equivalent of shouting fire in a crowded theatre – the only predictable outcome was massive queues and empty petrol stations, and sadly people getting hurt. And after all that, the strike isn’t even going ahead. Without wanting to sound like a conspiracy theorist, the boost to a weak economic quarter may well be a good thing for the government when those first quarter financial figures get announced. However, this story is one of poor politics and mismanagement. On the grand scheme, the fact a strike was discussed does not warrant higher billing than the stories I mentioned up front.

So, why have these two relatively minor stories won the day? Why have we largely ignored the damage being done to those most in need in favour of those with the greatest privilege, with the whiff of corruption looming?

I don’t know, but the mainstream media certainly has a role. The rolling and allotted news programs seem to focus on really simple, easy to tell stories, spending ever more time telling us ever less news. There is also an expected turnover period, meaning that once a story has been told there isn’t space for going into the same area in more depth – I noticed a tweet (sorry, I’ve lost the source) that said a BBC staffer preparing the audience for BBC Question Time said, this week, that the questions had to be topical, and so the NHS shouldn’t be raised. This in the week the Risk Register was leaked.

I sat and watched the ITN News while I was folding letters for the NHS pledge campaign. I saw politicians of all flavours trying to look comfortable and natural while ordering pasties and sausage rolls, while clearly bullshitting about how many they have each week. I saw government ministers telling people to top up their cars and keep jerry cans in the garage. I saw fearmongering about the pace at which drilling technology is being implemented. Nothing about the Risk Register, the economy or increasing social inequality.

These editing decisions, not putting the NHS above the pie tax or the economy above petrol buying, on the nations main news source are either laughably incompetent or criminally biased. Sadly, although I am not a consumer of that many news sources and haven’t monitored them that closely, I understand the problem is across the board. The stories get mentioned, but have not been investigated and examined in the way they should. People should be shown, or at least have easy access to, a clear picture on the important stuff: what is happening to the health service, what is happening to the economy, and how wealth and services are distributed between those that need them and those that can afford £250k to eat with Cameron and Osborne.

In part, the politicians are at fault here. Cameron and the Conservatives should be very pleased overall, as people talking about pie tax is massively preferable to people explaining why he has taken actions that will cause people to die because they are poor, and allowed his friends and business partners to profit from it. I don’t know how the Liberal Democrat leadership should feel, but then I haven’t cared even slightly about that for a while now.

The real political culprits here are Labour. They have had a week of open goals, and there have been occasional scores, but for the Eds to spend a day out and about eating sausage rolls, rather than pointing out the damage Osborne has done and continues to do to the economy, is barmy. They should be publicly pledging to repeal the NHS Bill.
But we can’t just blame politicians or the media, they are both built to give us what we want. We just aren’t aware or interested enough. The politicians literally get their jobs through a series of popularity contests. The media outlets are set up to ensure they maximise their profits – that’s why idiots like Delingpole and Mel Phillips are around – they draw huge numbers of clicks. This means that what they give you is what they think you want. I wrote a bit about media and healthcare reporting here, which looks at the tension between profit and quality healthcare reporting, and there has been a series of articles on media regulation at www.demsoc.org. So in addition to good regulation, we need to be savvy consumers if we want good media coverage of real political arguments. As a consumer, you should be demanding that you get critical analysis of the important issues.

After my rant on the day the Health and Social Care Bill was passed, lots of my Facebook friends got angry and wrote things on their walls. They largely hadn’t realised that they’d missed it, that the process had gone on for over a year, three readings in each house, and a pause for consultation. I am pleased that they felt a bit of outrage, and hope that some of them decided to do something with it; it’s just a shame they hadn’t been up to speed earlier. Writing on your Facebook page, or a blog like this unless you have a very wide readership, is useful in mobilising a small number of people, but largely it isn’t my Facebook friends or twitter followers that make the important political decisions. You need to tell MPs what you want and you have to tell media companies that you expect high quality factual reporting. When they balls it up let them know, and when they get it right let them know.

We are missing out on debate about the biggest decisions of our time, and everyone is gawping at fucking pies. I despair sometimes, I really do. Get on it people, or you will continue to get the media and debate you deserve.

NHS Pledge

As I suggested in my previous post, I am going to be contacting MPs and parliamentary candidates to ask them to pledge to repeal the Health and Social Care Bill. To keep track of this, I have started a new blog at http://www.nhspledge.co.uk to keep track of any responses I get. I might even tweet at @NHSpledge as news comes in.

If you get in touch with your MP and get a response, please let me know, and I will try to keep track of it all there.

Pledge to the NHS, Ed

Dear Ed Miliband,

I am writing to make a request. Publicly pledge to repeal the Health and Social Care Bill when you get into government.

The past few days, weeks and months have seen the Health and Social Care Bill go through both Houses, without MPs or Lords being shown the Risk Register despite the court ruling. As you are aware, this Bill was passed against the recommendations of the great majority of the governing bodies and unions of health professions, despite the largest public petition since the introduction of the epetition system and without any political mandate. My immediate, guttural response was written up yesterday – apologies for the swearing.

I understand, of course, that you cannot use the sort of language I have done in previous posts. But you are in a position to do something that no-one else is. As a potential Prime Minister, you can:

  • pledge to undo the move toward the two-tier, insurance based health system that this Bill embodies
  • pledge that public spending decisions are taken by public bodies, with the public interest at heart

The most effective way to do this, both in terms of setting up legislation and institutions, and selling it to the public, would be to repeal the bill in its entirety. This is what you should pledge to do.

Andy Burnham in particular made efforts to prevent the Bill passing and has said that he would repeal the Bill if in government. As Shadow Health Secretary, this is excellent news. However, he needs the support of the party leadership to ensure that this is carried out and to make the message sound credible. Will you lend him this support?

I feel that this would be an excellent political move, as there are a number of once Liberal Democrat voters in particular that want to see the NHS continue as an egalitarian system. Many on the left, centre-left and centre would prefer this to the overly expensive and less effective systems we see elsewhere in the world. There are many arguments in favour of a publicly funded and managed health service – value for money for the public, security in open and immediately accessible quality healthcare, minimal conflicts of interest and basic human decency.

If you pledge to ensure the Bill is repealed, I for one, would campaign for Labour for the first time. As it stands, I am an entirely inactive member, with serious concerns over the previous Labour government record, particularly around civil liberties, willingness to enter foreign conflicts unnecessarily and without proper planning, and light touch financial regulation. However, these reservations would be put aside for the sake of rebuilding arguably the greatest achievement of living memory – the NHS.

Please, publicly state that you will ensure that healthcare will never be two-tiered, run by private for profit organisations. The only way to get this message across succinctly would be a commitment to repealing the Bill.

I will be contacting your colleagues, both sitting MPs and parliamentary candidates, before elections to ask them to commit to the same pledge. I will also keep a public record of any correspondence I receive here, or possibly a dedicated blog, unless specifically requested otherwise. I will keep a running tally of those politicians that openly say they would repeal the bill, those who refuse, and those who do not answer given fair opportunity.

Of course, I do not wish this to be a partisan affair and I will be asking the other parties’ members the same question.

Kind regards,

pixie359