Taking a break

It’s been a busy couple of years. At the end of last month, my team at BMJ completed our work on creating new patient decision aids for the NHS, a major project which I’m proud to have played a part in. We did this while continuing to maintain and update our own website, Best Health, and to write regular news stories for our site and our clients. Alongside this hectic work programme, I undertook a creative writing course with the University of East Anglia and The Guardian, which is now also drawing to a close.

I’ve decided to prioritise my creative writing for a few months, making the most of the excellent advice and help I’ve received on the course from tutor Gillian Slovo and my fellow students. I’m taking a three-month break from work, and will be moving to live in beautiful Oughton Broad in Suffolk for the summer, with the aim of finishing my work-in-progress novel.

Thanks to BMJ for its enlightened policy of allowing long-serving employees to take sabbatical leave. Thanks to anyone who has been reading this blog. To find out how I get on over the summer, see my writing blog.

I’ll be back in August, refreshed and raring to go.

Making good decisions on healthcare

The NHS Rightcare Shared Decision Making project is one of the NHS initiatives I’ve been most pleased to be involved with over the last couple of years. It springs from a genuine desire to help people take more control over their healthcare decisions and participate more fully in the management of their health.

As luminary Sir Muir Gray is fond of pointing out, if operating on the wrong leg is a disastrous quality failure in healthcare, what about operating on the wrong patient? What could be more wasteful or harmful than subjecting someone to treatment that they don’t really want? Yet that’s what happens when people don’t fully understand the options for treatment, or feel pushed into agreeing with what the doctor advises, because they lack the knowledge or confidence to make an informed decision that’s right for them.

My part of the programme has been to work with the consumer health team at BMJ Group to research and write decision aids for people facing difficult decisions. The challenge has been to put across complex information in a way that makes it easy for people to understand, and to tease out what is important for the individual in making their own decisions.

We’ve worked with dozens of committed clinicians, who help patients make these decisions all the time. We’ve worked with patient representatives, and decision scientists, and countless others. The results can be found on the programme’s website, here. But to see how they work in practice, have a look at this video. It’s beautifully made and quite inspiring, after all the hard work.

Getting the message on health literacy

My aim as a health writer and editor is to provide information that helps people make good choices about their health and healthcare. My team at BMJ Group write and edit patient leaflets, news stories and decision aids, all with the aim of helping people understand their health and their choices better.

We spend a lot of time scrutinising data to make sure what we tell people is accurate. This is to ensure we’re not misled by a press release that talks about ‘trends’ when the study being promoted did not show a statistically-significant result, or to work out base-line risk in a study that is determined only to give relative risk. We want to get it right.

The rest of our time is spent trying to get that across in an understandable and useful way. Often, the two aims are hard to reconcile. ‘Ah, but you can’t just say that, because the study populations were different,’ is a phrase I hear a lot, usually when I’ve just brilliantly summed up the effects of one treatment versus another. It’s a difficult job, but that’s why I like it.

So it troubles me to learn that much of the work I and others like me do is not helping as many people as it should. Not because it’s inaccurate, but because people can’t understand it. A study reported before Christmas from Keele University found that around half of people (43 in 100 to 61 in 100) had literacy or numeracy skills below the level required to understand most of the patient information materials published today.

The topic was picked up by Radio 4′s Inside Health this week, when King’s Fund fellow Angela Coulter gave a typically incisive interview about sacrificing simplicity on the altar of strict accuracy. No-one is suggesting we should abandon the care we take to ensure materials are accurate. But what’s the point of producing them at all, if half the people who need them can’t use them? Food for thought which I’ll be taking back to the office on Monday.

Health literacy looks like being an important buzz-phrase this year. The Patient Information Forum is quizzing its members about how they ensure materials are easy to understand. The Information Standard has criteria asking members to demonstrate they have taken ease of use into account. I recently organised a training course at work for patient writers and editors, given by the Plain English Campaign, which focused on the use of plain English in the production of medical information. The bar for producing good quality health information just got higher.

Register all clinical trials, report all results

A campaign launched this week that is important for everyone. The All Trials campaign, run by the organisation Sense About Science with support from the BMJ and other luminaries, demands that all medical trials should be registered, and that all trials should report their results.

It may not sound that exciting – indeed, you might be surprised to know it’s not already the case. The Times had a good editorial explaining why it was necessary. At the BMJ, editor Fiona Godlee was joined by evidence-based-medicine pioneers Iain Chalmers and Paul Glaziou in an editorial highlighting the dangers of the current system. Bad Science and Bad Pharma writer Ben Goldacre has long championed the cause.

But in case you’re defeated by pay walls or broken links, here’s the gist of the argument. If you’re a drug company and you have a new drug under development, you need to test it in big, high quality randomised controlled trials. These are the trials most likely to give you a true result, where you can see if your drug works better than placebo, or than the established, older treatment for a medical condition.

Some studies are likely, by play of chance, to be more favourable than others. If you only publish the favourable trials, it looks like your drug works better than it does. If many trials are done over time, and all the negative trials (the ones which showed it didn’t work any better than placebo) are quietly shoved into a bottom drawer, the evidence base becomes distorted.

That matters to everyone – patients taking the drug, doctors prescribing it, researchers working on other drugs that might just be better, taxpayers funding the NHS (see the amount the UK government spent on Tamiflu, based on incomplete data). It’s also a betrayal of the people who took part in the trial, who thought they were doing so to advance medical knowledge, not safeguard the drug company’s bottom line.

Convinced? Good. Sign here, please: http://www.alltrials.net/

The new moderation

So, New Year, New You – time to give up booze, start a new exercise regime, cut out the chocolate and decide 2013 is the year you will finally get fit, yes?

Actually, maybe not. I’m not a big fan of banning things, or cutting out what you enjoy completely (except tobacco – there’s really nothing good about tobacco). Deciding to quit alcohol for January (the science-free ‘detox’ so beloved of the media) makes what can be a miserable month just that bit less cheerful, and runs the risk of keeping alcohol so much in your mind that you can’t wait for that first glass (or five) when the self-imposed ban is up. And I’m aware of that ‘hockey stick’ curve on the mortality graph, where teetotallers are just that bit more likely to die early than those people who enjoy light or moderate drinking.

Same with chocolate, or anything you really enjoy. Winter is a time for warming hot casseroles, steamed puddings and hot chocolate – just not every day.

I was intrigued by a story on Best Health this week, which suggests that moderation may apply to your weight, as well. I’m always a bit cautious about stories linking length of life with just one factor, as there’s so much chance of missing another important factor (confounding). However, something feels ‘right’ about this story, which suggests that being a little overweight may actually protect you from an early grave, rather than consigning you to one. It’s the extremes, whether being too thin or obese, that seem to do the damage.

So I’m setting myself some decidedly modest health goals this month. I’m planning to drink no more than a glass of wine  a day, two or three days a week. I’ll get out and about for a walk or a bike ride when the weather allows, enjoying the shreds of sunshine that peek through the clouds. And I’ll aim to eat more vegetables than I do any other type of food. Cheers, and have a Happy New Year!