Oh brave new world that has such doctors in it!

October 28, 2014 at 10:38 am | Posted in Uncategorized | Leave a comment
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NHS-LogoI’m a writer, and like many writers I’ve got what a friend of mine calls “text hunger” – if it’s there, I’ll read it. One such recent encounter was with one of those little leaflets that come with medicines.

Two things struck me about this text. The first, of course, was the bizarre range of symptoms I’d risk by taking the pills. Medicines by Big Pharma, side-effects by Goya. As it happened, I didn’t lapse into unconsciousness, my skin did not peel off and my eyes remained resolutely un-yellowed. (It was only a sinus infection!)

The second thing that struck me was the way the leaflet’s writers kept exhorting me to contact my doctor if I had any problems. As one of the side-effects was coma I’m not sure how they envisaged that scenario; but that’s by the by. I was left with the strong impression that wherever the writers lived, it was somewhere with truly amazing healthcare services.

The same impression seeps like a miasma of optimism from Internet sites about health-related issues. Any queries? Go talk to your physician, they’ll sort it out. Got a headache? (It could be a brain tumour!) Ask your GP; they’ll calmly steer you through your anxieties. Afraid your fever might be Ebola, not flu? Just get an appointment and check.

As for the frequent media reports of wonderful medical advances, with their tales of current patients carefully examined and lengthily treated, and future patients whose medications will be personalised to their particular circumstances, they seem designed to raise unrealistic expectations.

Where is this fabulous land in which doctors sit, primed and eager, in their surgeries, with all the time in creation to soothe, heal and most of all listen? It isn’t here. Nor, I suspect, is it where you are (though I’d be delighted to learn otherwise). Unrealistic? It’s like reading the Narnia books, except I’d be less surprised if I met a talking animal.

How does anyone think we are going to find the time and money to do all this personalising of medicine? Here in the UK we can barely afford the current NHS. Despite swallowing vast quantities of funding and research time, problems like obesity, alcoholism and dementia aren’t about to be ticked off the healthcare agenda. Medics may be able to do astonishing things like helping the paralysed to walk, but there are still an awful lot of common conditions – from arthritis to Alzheimer’s, chronic fatigue to Crohn’s disease – which they struggle to manage successfully, let alone cure.

Now and again the media, presumably tired of simulating Dr Pangloss, flips into attack mode and screams about hospitals in special measures and patients expiring for lack of medical attention. We have those round here too: a ring of hospitals so poorly that we can only pray we never get sick enough to need them. But over-emphasising the negative is no more helpful than dishing out happy positives. When a friend of mine needed urgent care, it was given with quick and kind efficiency.

Plus or minus, public visions of the NHS seem worryingly detached from the reality. I heard a top doctor on the news the other day fretting about how paying doctors to diagnose dementia could affect the doctor-patient relationship. What relationship would that be? Every time I visit my surgery I see a different person. They are almost all kind and pleasant, but they have a demoralising aura of hurry and overwork, as if patients are not so much people as problems to be solved, with a pill if possible or a referral if not.

Our GPs are so busy that same-day appointments are a rare treat. This may be because they are currently overwhelmed by people panicking about Ebola, as a friend sourly suggested, but I doubt it. The NHS I know – the real one, not the media fable – has had these problems for years. All those siren voices encouraging people to book appointments may not have helped, but the problems run deeper than mere anxiety.

Moreover, not everyone panics. There are many patients who, like me, ruinously distort their nation’s health statistics by not going near a doctor unless they’re driven there by nagging friends and relatives. A cold or flu? Pile on the painkillers, whip up a honey-and-lemon. Lingering coughs and strange twinges? Wait a week or two and see if they get any worse. I had my sinus infection for months before I bothered the doctor with it, and that was only because I was getting so deaf it was making conversations difficult.

When I did finally approach the surgery, there wasn’t a hope of actually seeing a doctor that week. I managed to get a prescription purely by telephone, from a complete stranger whose scheduled morning call was three hours late. The consultation may have lasted as much as five minutes. And the pills didn’t work, so I had to go back again.

This is the real NHS: good people doing their best in near-impossible situations. They can fix many basics. There’s a huge amount they can’t fix, because medicine just isn’t that accomplished yet.

But it’s not just that. Patients and future patients ramp up the problems by smoking, overeating, drinking too much, sitting around all day and/or refusing to take responsibility for their own health. That’s you and me both, and the world and his wife or partner, egged on by the media, politicians and various industries whose business models depend on our laziness, greed, short-termism and anxiety.

Why is it so difficult for people in the public eye – politicians, doctors, media commentators – to say so? Why the polished pangloss or the exaggerated panic? The NHS has enough to deal with without these crazed swings from love to hate, from praise to vituperation. And those of us who see the NHS as a national treasure need to think clearly about its needs, which are our needs – especially with a general election looming.

How can we do that if no one will tell us the truth, unvarnished, untarnished and without obfuscation and propaganda? I know humankind cannot bear very much reality (Mr Eliot said that, so it must be true). But surely we could bear a little more than this.

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A modest proposal for the science media (2)

September 17, 2013 at 11:28 am | Posted in Uncategorized | 1 Comment
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(Feel free to take it in the spirit of the great Jonathan Swift’s original.)

What prompted the proposal

Most mornings, I say hello to the Internet. In return, I find a slew of press releases, heralding recent, or even advance, publications in neuroscience, psychology, medicine and health. Most of it’s from just-published studies, dolled up by press officers and spoonfed to the media. And, as the UK’s Astronomer Royal Martin Rees has implied, a lot of it’s tosh.

I tell my students that it’s better to read first-rate science fiction than second-rate science. It’s more stimulating, and no more likely to be wrong.

In my previous post, I discussed two examples of high-profile science. One, a study published in the Journal of the National Cancer Institute, proposed a link between omega-3 fatty acids and prostate cancer. The second, in the prestigious journal PNAS, proposed a link between copper (Cu) and Alzheimer’s disease (AD). They triggered this particular piece of devil’s advocacy, but they’re only two examples of very many, and my beef is not with them, but with the system that produced them.

A modest proposal for reform

No media organisation with more than 10,000 regular readers should be allowed to publish news of any scientific research until one year has passed from the date of first publication, or the study has been successfully replicated.

The omega-3s/cancer and copper/Alzheimer’s studies were widely reported. What did this high profile achieve for the general public?

Many will have missed, ignored, or instantly forgotten the news. Some of the rest, however, may have worried about whether they should change their diet. They may have asked their doctors about it, or wasted time surfing dubious Internet sites. A few may even have used the study as an excuse for not eating more fruit and veg. Others may have thought, crossly, that they wish the bloody scientists would make their minds up, or remarked that you can’t believe anything you read in the media these days.

I’d be willing to bet that very few will have rejoiced at the extent of their new empowerment, thanked the Press for bringing them the truth so quickly, and happily formulated a new, fish- and fruit-free diet in order to live long into healthy old age.

In other words, we may have a slight increase in anxiety, cynicism and distrust of science, but on the positive side we have … what, exactly? The thrill of novelty. Pages filled, buttons pressed, teeny-weeny neurotransmitter hits delivered. Readers fooled into thinking this particular organisation is hovering at the cutting edge and holding the boffins to account. And this benefits the public – how?

It benefits the media. It also benefits the authors and their institutions, given the current insistence of funding bodies on generating ‘impact’. But science, wisely, distrusts new findings and insists on them being repeated before it takes them too seriously. Might not the science-media-reading public benefit from knowing that a similar standard has been applied to what they are being told? We’re already overloaded with data, or at least information. The modest proposal would reduce quantity and boost quality. It should also give journalists more time to do investigative science journalism.

As it is, quite often reporters don’t understand what they’re reading, because they aren’t specialist science journalists, and the reader doesn’t bother glancing past the headline anyway. This isn’t a criticism of either: readers and journalists are busy people, and even experienced scientists can struggle to understand publications in other scientific disciplines.

But scientists are to some extent held to account by the profession’s self-correcting mechanisms, and its longer timescale – though publicity-chasing for ‘impact’ may distort these. In the media, sensational findings are common; reports of how they were discredited are rarer.

Six conditions for publishing science journalism

Obviously the modest proposal would need expansion. For starters, how about the following six conditions to be met before the news is published:

1. At least two independent experts to be consulted about the study’s merits, and their views to be reported on whether the study is mainstream, minority, maverick, nonsense, or dangerous nonsense

a. If both experts class it in the ‘dangerous nonsense’ category, the journalist may consult three more experts
b. If these disagree, the views of all five should be reported
c. If all five concur that it’s dangerous nonsense, the report should be scrapped

2. Similarly, the experts to be asked for their judgement on whether the headline is appropriate, and that judgement either to be taken into account, or at least reported

3. The journalist to have read at least the introduction and discussion sections of the article, not just the press release

4. Potential conflicts of interests to have been checked by the journalist – and not just by reading the authors’ ‘yup, we’re clean’ statement

5. For health studies, a risk assessment has shown that the putative risk to human health (the ‘culprit’) identified in the study is higher than the risk to health which would follow from giving up the culprit – or at least state both numbers in the report

6. Information about the study should, at the very least, include baseline values as well as the size of the effect/risk/change, the type of study, a link to the article, and the number of participants tested.

Or, how about a kitemark?

I try to be a realist, and realistically, the modest proposal is never actually going to happen. Instead, it would be great if someone could set up a kitemark, a signal of quality, for science journalism, administered by an independent body. I don’t think it would be fair to apply it wholesale to organisations, but individual pieces, and major blog posts, why not? If they were required to display the percentage of their articles which have received a kitemark, that might encourage them to aim for a higher percentage.

Come to think of it, why don’t we do that for the whole of journalism, and make the industry fund the jobs required? Better quality and more employment, in one!

A modest proposal for the science media (1)

September 17, 2013 at 11:18 am | Posted in Uncategorized | 5 Comments
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(Feel free to take it in the spirit of the great Jonathan Swift’s original.)

What prompted the proposal

Most mornings, I say hello to the Internet. In return, I find a slew of press releases, heralding recent, or even advance, publications in neuroscience, psychology, medicine and health.

Two in particular have caught my eye of late. One, a study published in the Journal of the National Cancer Institute, proposed a link between omega-3 fatty acids and prostate cancer. The second, in the prestigious journal PNAS, proposed a link between copper (Cu) and Alzheimer’s disease (AD). Both were much discussed in the media. They triggered this particular piece of devil’s advocacy, but they’re only two examples of very many, and my beef is not with them, but with the system that produced them.

Everything’s bad for you

As it happens, I do some editorial work for a small research charity, the Institute for Food, Brain and Behaviour (IFBB), and I was recently at a colloquium with some people who’ve spent their careers researching omega-3 fatty acids. Let’s just say that when I heard about the fatty acids/prostate cancer article, I raised a sceptical eyebrow; when they heard, they tore its methods into little tiny pieces. You can read a brief summary of some of the criticisms on the IFBB website.

This isn’t just abstract theorising, or scientists quarrelling among themselves. It matters. I’ve already been told of one elderly man who’s very anxious about whether he should stop taking fish oil supplements. The stress has probably already done him more harm than the omega-3s ever will – but he believes what he reads in the papers, as many people do.

(And yes, a cynic might say he shouldn’t, but that’s close to accepting it’s OK for papers to print stuff that is, when you get down to it, not true.)

The copper/Alzheimer’s study is preliminary work, done in mice and in human cell cultures. What the authors say in the paper is this:

“Whereas the role of environmental factors in the development of the sporadic form of AD is controversial, long-term exposure to higher levels of Cu may contribute to this process, at least in some cases.”

Note the qualifications: ‘may’, ‘in some cases’.

By the time this reached the press release, it had acquired the headline, ‘Copper identified as culprit in Alzheimer’s disease’, a warning advertisement – how to tell if you’re about to get Alzheimer’s – and (because most of us don’t chew on copper pipes, though we may get our drinking water from them) a list of copper-containing foods.

Why? Are we to stop eating “red meats, shellfish, nuts, and many fruits and vegetables”, for fear of dementia? Or perhaps we should merely cut down on these foods? Red meat I can understand; both doctors and environmentalists keep telling us we should be eating less of that. But surely the benefits of fruit and veg outweigh the risk of dementia? – especially given everything else that’s been linked to Alzheimer’s over the years.

The press release’s last two paragraphs, for those who get so far, are more cautious. They read as follows:

However, because metal is essential to so many other functions in the body, the researchers say that these results must be interpreted with caution.

“Copper is an essential metal and it is clear that these effects are due to exposure over a long period of time,” said Deane. “The key will be striking the right balance between too little and too much copper consumption. Right now we cannot say what the right level will be, but diet may ultimately play an important role in regulating this process.”

Indeed. So why isn’t this right at the top of the press release?

To be fair, the press release provides a link to the article, which not all of them do. It’s got quotes from the authors, and it does a good job of explaining. It’s not a bad example of the genre.

And yet …

This is one study. On animals and cells, not people. It has a plausible mechanism, which is more than many nutritional epidemiology studies do, but it seriously needs replication. Not everyone agrees on what causes Alzheimer’s, and no one’s saying copper is the only ‘culprit’, that morally-laden word. (Bad chemical! Stop tormenting those brains!) Possible causes for this awful disease frequently hit the headlines, long before we’ve any idea whether they really are ‘the’, or even ‘a’ culprit. We still can’t do much to help someone with Alzheimer’s.

Likewise, one study hinting at a possible link between omega-3 fatty acids and prostate cancer does not make a theory, let alone a major new truth.

Health reporting implies the impossible

Besides, even if ye ordinary hassled consumer swears off eating anything with either copper or omega-3 fatty acids in it, that doesn’t mean he’ll dodge either Alzheimer’s or cancer. There’s this implicit claim: if you can only eat/behave/think properly, your life will be long and healthy, your old age serene, and your death an easy one. The definition of ‘properly’ varies, but it’s always presented as having the authority of science behind it. This causes problems if the report is also trying to emphasise how new and revolutionary its wonderful new findings are, because it makes science look as featherweight as the media.

With the claim comes a nasty moral innuendo: if you’re ill, it’s your fault, your failure. This victim-blaming isn’t just abstract psychologising. In the UK, disabled people are now often labelled as ‘benefit scroungers’, as if their inability to work is either a) a lie, or b) entirely self-inflicted. It isn’t.

Where’s the evidence that a single, perfect lifestyle for health exists? Or, for that matter, that people whose lifestyles aren’t perfect are morally flawed?

And this doesn’t just apply to health issues. The ideas that

• all our problems can be fixed by physicists, chemists, engineers, etc.

• good enough tech will obviate the need for hard work

• if we could only get the systems right we’d be able to erase human wickedness

• you are a failure if you do not know about — or at least, have an opinion on — far, far more than any previous generation of humans

are just as dubious, yet all are implied in the breathless reporting of advances in science, new technologies, and institutional failures.

This isn’t just froth. It matters. These assumptions worm their way into our heads, changing both our behaviour and our attitudes to others. They set up false expectations. When those expectations fail, we blame the people who couldn’t meet them, not the media who spread them. We also torment ourselves with our efforts to achieve an impossible perfection. The result is unnecessary unhappiness.

In my next post, I’ll consider a modest proposal for reform.

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