Sunday, 16 December 2012

Getting off the Information Overload

Here in the Tumourland Fun Park, there are many rides. Not all of them much fun.

The one which has occupied me most recently is The Big Dipper,  the rollercoaster while hurtles the lumpy thrill-seeker from the pits of fatigue to the peaks of steroid anxiety over and over again, by way of an afternoon's entertainment.

I've been off work for a couple of weeks playing on that one. I don't recommend it - it gives you all the low bits first, which is kind of rubbish, then a quick reintroduction of the old dexamethasone chucks in all the highs and subsequent plummets in quick succession: now I'm wired, now I'm tired, now I'm tense, now I'm knackered, now I'm anxious... woooargh!, throw hands in air, go for a wee nap. There are better ways to spend your time. One of my friends told me my last blog had a "great amphetamine flavour". It was intended as a compliment. but I've never had many aspirations to be Hunter S Thompson.

The other popular ride in the Tumourland Fun Park just now is the Information Overload. I've written about this before: it's the one where you get handed a huge tightly-wound tangle of difficult to process data and are somehow expected to unravel it for use; to work things out for yourself and explain them to other people without doing too much further damage in the process. That one's a real blast.

Just to make it a little more exciting, the Information Overload also throws in the internet and the press as an exciting twist. Then it spins you round and round until you're really very confused and quite dizzy.

The internet is one thing, uncurated as it is: if you must journey into its hinterlands, at least remember that you're also probably reading randomly, and check things out with a trusted source – don't just accept everything as if publication somehow bestows an equal value on it all. The news media, however, ought to be one of those trusted sources, providing its readers with reasoned, balanced analysis in easy-to-understand form.

It doesn't, though.

Take the case of Sally Roberts, who ran off with her seven-year-old son Neon (I know, I know) in order to prevent him receiving radiotherapy which medical opinion says he quickly and desperately needs, because she was frightened of its potential side-effects and wanted to investigate more "holistic" alternatives.

Although I think Roberts is a very silly woman, and I don't believe for a second she had the right to make that decision on behalf of her son, I have some sympathy for her insofar as I presume she is also very afraid, and very shaken around by the Information Overload.

Look at it this way…

Suppose you were presented (as I was) with radiotherapy as an option. And the doctors (ooh, suspicious, authority figures) explain that they've done years of research (ooh, scary difficult science funded by big evil companies and probably involving bunny-blinding) and they've worked out that it works very well (ooh, why isn't it perfect?) but there are some risks, some of them potentially quite nasty (ooh, scary, it'll happen, it'll happen, aargh!), but it's the best they've got, and actually very good for most people.

Supposing instead you were presented with… let's call it fluffytherapy, as another option. And the alternative therapist (ooh, alternative!) explains that after centuries of natural holistic chanting (ooh, natural, holistic!) done by some Amazonian tribesmen for no related purpose at all, they've just decided it works (ooh, just works!) and because it's never been tested but is quite possibly too ineffectual anyway it has no known side-effects (ooh, no side-effects!) and it smells quite nice (ooh, natural, therapeutic!) so it must be good for you.

And so the Information Overload spins the gullible, and even the not so gullible, around until they're too dizzy to get off on the side without the cliff. Did I mention the cliff? That's the third option, which is that the major side-effect of not taking the radiotherapy is death.

All that data, so much of it worthless, and no-one except for the medical establishment Roberts seems to regard with such suspicion to put it in perspective, to explain why the evidence supporting radiotherapy carries more weight than any supposed alternative. It's a shame that she sees them like that: they were very good to me - I had a meeting with an oncologist, a radiotherapist, a specialist nurse and others right back at the beginning, pretty much just so I could ask questions, and it was very useful even if I've barely stopped asking more since.

But maybe she needs another trusted source. Yet even in the quality papers, in the last week I have read columnists who instead of trying to analyse the situation have reinforced her silliness by wittering about how not enough consideration is given by doctors to parents' instincts, as if some vague feeling somehow has to be given equal weight to years of research and experience. Sure, doctors should take parents' feelings into account, insofar as they should be making sure that they understand why the recommended treatment is the recommended treatment, and not Hopi ear candling or whatever. But there the line is drawn - after that, parents have to realise that they have a responsibility to protect their children, not a right to endanger them. Some parents are full-body resurrectionists who want to prevent their sick kids from receiving blood transfusions, others think the vile practice of  female genital mutilation is in the best interests of their wee girls. Against hard evidence, instinct, belief and mere preference mean nothing at all.

So that was the quality press. Worse again, though, was the huge steaming turd of an article dumped by one of the mid-market tabloids on its readers, under the headline "Do Cancer Alternatives Really Work?".

I'm not going to link to it, because I don't want to encourage it. But, below the meaningless headline (what is a "cancer alternative"? – a new way in which our cells can explode into uncontrolled growth?) this piece of non-journalism used the Sally Roberts story as a run-in to a seemingly random selection of descriptions of supposedly alternative therapies, some of them quite dangerous in themselves, others inherently useless, but all potentially harmful if regarded as in any way alternative to the properly researched and continually developed treatments which we know work and are getting better. And so a British newspaper and its website managed to give apparent equal weight to the stupid and the real.

It's not unusual. The standard of health and science reporting in the country has long been appalling. Once again, I recommend Dr Ben Goldacre's insightful but also very funny book Bad Science for a well-written and clear take on this, and for some pretty shocking stories about so-called alternatives therapies, too. Why not try his new one, Bad Pharma, as well?

I also recommend the website Sense About Science, which aims to help us all decide what's real and what isn't when it comes to science and health. It claims a database of 5000 scientists from whom to draw, including Nobel Prize winners and famous names such as Dr Simon Singh. It also currently carries a corrected version of the tabloid piece I mentioned before, and I do encourage you to read that, because it manages to point out some dangers and clear up some misconceptions.

I'd also like to point to Sense About Science's excellent leaflet I Don't Know What To Believe. Please give it a read, and bear in mind its ideas when you read science and health stories. More so if you write them. It's nice and clear, even to us journalists, who were quite often the arty kids who weren't that good at sums.

It doesn't contain all the answers, but it makes getting off the Information Overload just a little bit easier.

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