Invasion of the body snatchers?

I'm not a great fan of sci-fi, but those films I do enjoy are the older ones that raise philosophical questions (The Fly considers a classic question in philosophy around identity and the mind/body problem) or political questions (the original Body Snatchers airs concern over communism). The Invasion of the Body Snatchers is particularly scary because the point is that you can't tell who is still human and who is now alien. When you can't tell it's so easy to get yourself trapped with the wrong sort of person.

This conundrum - how do you tell good from bad, real from fake - arose this morning. There was an item on the news about a man whose skin cancer had been cured by an injection of his own cloned immune cells. The report is full of detail - the cancer was advanced, had spread, five billion cloned cells were used. It all sounds plausible to the lay person, and it's on the BBC website and in the Guardian so it must be true, mustn't it?

It's certainly a rather bizarre story. For years we've been told cancer can be cured only through radical surgery, chemotherapy that makes you feel worse then the cancer ever did, and a very large dose of luck. Now we're being told that our own immune systems can reverse very advanced cancer.

Only two days ago the American Food and Drug Administration warned people off products sold on the internet as cancer cures. These "cures" include shark cartilage, coral calcium and various mushrooms. To the untutored eye shark cartilage is no more or less mad an idea than injections of cloned cells. Quackwatch even has a section refuting claims that animal cells injected into the body can cure cancer, which seems very similar to this current story.

This story comes from good sources, and I hope that the research will be proved to be correct, verifiable and repeatable. But in the meantime people with cancer - and other diseases - will continue to clutch at straws, to take the hands of Pod People and to chose the fake and the dangerous over the safe and the real. Who can save them? Perhaps a well informed, thoughtful, understanding clinician with time to listen and explain?

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Read all about it!

I've mentioned the "Behind the Headlines" service before. It replaced the "Hitting the Headlines" service that the National Library for Health used to produce. Although still available through the National Library for Health it's actually produced as part of NHS Choices - the patient information site.

As with Hitting the Headlines this takes stories that are in the news looks at the science behind it. It presents the information in a really useful way. Take a recent example - reports in various papers that chlorinated water causes birth defects. Scary stuff - but it is it true?

The report on this topic is broken down into sections. There's a brief explanation an summary of what the news stories were about, what the stories were based on, and a brief appraisal of that original source. This section alone is useful, but there is more.

There are details of who wrote the paper, the researchers' affiliations, and the publication it appeared in. There is a longer section looking at the study and explaining what sort of study it was an how it was carried out. This is rounded off with an explanation of the researchers' findings and conclusions.

The next section is what the National Knowledge Service thinks about the paper - basically a critical appraisal of the original research. It looks at how the study was carried out, considers the statistical significance of figures in the study, and highlights gaps in the information presented.

The whole piece concludes with links to the original newspaper stories and also to the actual paper that sparked off the whole debate.

I think this is an excellent resource. It's a useful example of how we should look at evidence and appraise it, but also useful for sitting down with patients and explaining to them why they don't need to worry about the latest doom and gloom health headline.

In fact, I like these so much I have a nice RSS feed to bring Behind the Headlines to my Google Reader and from there I often flip them into the current awareness service.

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What do you think of it so far?

What do patients think of us? How do they rate the cleanliness of hospitals? Do they like the food they are served? Do they see good teamwork between doctors and nurses? How long do they wait in A & E? The Healthcare Commission regularly surveys patients and their latest findings are out today.

How did Colchester Hospital University NHS Foundation Trust do? Well - we were neither in the top ten...nor the bottom ten. Those of you with a competitive streak can compare the results by trust or against previous years.

NHS Surveys has information for patients on how to complete questionnaires. It also has information on the other surveys of patients that are carried out from time to time.

There's nothing like asking service users what they think to help you improve your service. It's easy to guess what we think other people would like - but do we always guess right? Does your great aunt Hilda always guess right what you'd like for your birthday?

It's also horribly easy to do things for our benefit, rather than our users. I do it too. Only today someone told me that the they couldn't find what they were looking for on the library web pages. I think they are nice and clear - but then I write them, and I look at them regularly, so of course I can find everything I need on them.

There is an NLH specialist library on patient and public involvement. There is a Commission for Patient and Public Involvement in Health. NICE encourages patient input into its work. Individual trusts also welcome input from patients and and the public.

Of course, one of the easiest ways to find out what people think is just to go ahead and ask them. Please feel free to let me know what you think about our service or the website or this blog. I'm all ears.

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Calling a spade a spade

Have you ever had a conversation with a lawyer/plumber/car mechanic and got frustrated because you didn't understand half of what they were saying? How did that make you feel? Probably like a prize idiot. Did you ask them to explain what they meant? Probably not. I'll bet you worried, too - somehow when we don't fully understand we assume the worst.

Put the shoe, if you will, on the other foot. When you speak to patients do you use medical or healthcare terminology? And how does that make your patients feel?

The problem is you don't set out to flummox anyone. It's so easy to forget that Jo Public doesn't know her excisional biopsy from her lumpectomy. When we use words every day we forget that they aren't everyday words. And of course you tell your patients that they can ask about anything they understand, but is it easy to admit ignorance? And what words do you use to explain lumpectomy? My trusty Dorland's says it's a surgical excision of only the palpable lesion in carcinoma of the breast. Yeah, right.

Luckily help is at hand from the (American) Medical Library Association. They have produced online leaflets to help people "decipher medspeak". The leaflets cover breast cancer, diabetes, heart disease, eye disease, HIV/AIDS and stroke. They also have lists of the pesky Latin abbreviations that might end up on notes.

The MLA isn't alone in feeling flummoxed. The Royal College of Obstetricians and Gynaecologists has a list of medical terms explained. A list from UCL helps decipher words by giving the origin of some of the bits of words that commonly crop up (exo, endo, angio, broncho, cardio). KidsHealth explains really basic words from acne to wisdom teeth, and the NHS Direct glossary takes you from abdomens to x-rays.

And a lumpectomy? Easy. It's a surgical procedure to remove only the cancerous breast lump.

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Tie a yellow ribbon

Betcha didn't know that this is National Knowledge Week for acne vulgaris. National Knowledge Weeks are an idea from the National Library for Health. Each of the weeks highlights one of their specialist libraries and the latest information in it.

Practically every day, week or month is designated to celebrate or highlight something. Next week is Prostate Cancer Awareness Week, this week is Endometriosis Awareness Week. March is also National Bed Month and Ovarian Cancer Awareness Month. In fact there is a whole list of health awareness events on the EQUIP website, from the West Midlands Library Services Development Unit. The Department of Health, in its wisdom, no longer produces its list of events.

Awareness events aim to make people more aware of a particular disease or condition. They help raise funds for research and perhaps encourage people to come forward for screening. Awareness weeks are sometimes behind the odd stories in the press. I suspect that the recent story in the Mail on how a bad pillow can ruin your sleep makes might not have got into print were it not National Bed Month, although they didn't mention that in their article.

Do awareness campaigns work? Some people think they just give the worried well one more thing to fret about - and increase unnecessary trips to the GP's surgery. News coverage of the latest celeb to get breast cancer may send thousands of young women scuttling home to check their breasts, but it also skews their understanding of risk; the main risk factor for breast cancer is age.

With awareness comes ribbons - red for AIDs, pink for breast cancer - in fact there is a whole world of ribbon campaigns out there.

If you really want to be aware of all the latest health news then plug into our current awareness service. No ribbon required.

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Two heads are better than one

The worst part of visiting the optician, for me, is the trial by coloured target. "Where do the black circles appear clearer - on the red, or the green?" Different lenses are passed across my eyes. "The red? Or the green?" My reply is possibly, maybe, perhaps the red is just a tad clearer? And I always long for the optician to say "that's right! Well done! The circles are clearer on the red." Instead, no matter how I try to make my answer sound like a question the optician only nods sagely and scribbles on a little card. Did I get it right? Have I made a mistake? Have I ruined my eyesight through inappropriate specs prescribed because I can't decide whether the circles are clearer on red or green?

Sir Roy Calne, in a letter to today's Lancet (access with your Athens password), says that it's the same for hospital patients. Arrive at a meeting with your consultant and she or he will offer you a swathe of options and ask you to chose one. Sir Roy describes being made to make important decisions about your own health care as akin to "being catapulted onto a tightrope wearing a blindfold, and then being asked to chose whether to jump to the left or the right". It would make sense to ask the doctor what they would chose, were they in your shoes, but "policy discourages an answer to this very reasonable and pertinent question."

The government is very keen on patient choice. A lot of this is about how, when and where you receive treatment. You can pick a hospital that is nearer to your own home, or perhaps nearer to a relative who will be able to visit. You can check to see which of the various targets your local hospitals are achieving. You can speak to friends and neighbours and find out about there experience. You can shop around, as it were, to find the best place for you.

If you have chronic illness then you've lived with it for years and years. It's not the same as being a doctor who has studied it, but you have plenty of first hand experience of what helps and what doesn't. You're considered to be an expert patient.

For the non-expert (amateur?) patients among us we can read up about our illness on the internet. The days when ordinary people had to rely on simple first aid manuals in the public library, and had no access to medical papers, are over and done. Some journals are free online for everyone to look at. We can form an opinion about what treatment we would or would not like. We might take into consideration the experiences of friends and relations who may have had the same illness. We're grown ups and we don't want to be spoken down to by an omnipotent and paternalistic doctor. We don't want to be told what to do.

However, do we really want to be left entirely to our own devices? My head aches, I pop into the chemist buy some aspirin. If the headache persists I want to be able to talk to someone who can tell me what to do about it. My sex life seems a little dull so I go online and stock up on viagra. When I ignore the warnings on the packet and my vision turns blue I have no one but myself to blame.

Roy Calne suggests we've moved from thinking that the doctor knows best to thinking that the patient knows best. Surely what is needed is a balance, a conversation between adults. On the one side the doctor has his or her education as a foundation, then CPD and reading the evidence layering on top of that, interwoven with experience of similar patients, similar cases. The patient has their own reading they have done. Perhaps, because their one interest is their own particular illness, they have read more thoroughly or more recently than the physician who has more than one illness, more than one patient, to consider. The patient has their own particular wants and needs, based on their religion, their outlook, their personal situation.

The library current awareness page covers stories on patient information, involvement and experience. We have book on consulting skills. We can help you find the best evidence to make sure you - and your patient - make the right decision, together.

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One in a million

More on relative risk and quality of information. Phil Bradley's blog alerted me to an item that looks at the incidence of inaccurate data on breast cancer web sites. Apparently 5% of sites looked at contained inaccuracies. The conclusion is that patients should be sceptical of things they read online.

I'd agree that a spot of scepticism is always useful, but it seems to me that the result of this study is that a whopping 95% of websites looked at had no inaccuracies. I find that really heartening - it restores my faith in the quality of online information. Having said that I am, of course, suffering from a common problem here. I haven't read the paper in Cancer that reports the study. I haven't even read the abstract. I've just read the Reuters report on the paper. Did the original paper say how many inaccuracies there were on each of the offending sites? Or how big those inaccuaries were? Or how important? How did they select the sites they looked at? The Reuters report doesn't say.

On a similar theme I've today posted a link on the current awareness page to a paper in JNCI looking at women's perception of risk of recurrence of Ductal Carcinoma In Situ. Women with DCIS are understandably anxious and that leads them to believe that the chances of it recurring are far higher than is actually the case. It's just as well that there is no link between having an anxious - or any other type - of personality, and cancer.

For accurate statistical data on breast and other cancers, Cancer Research UK is a good starting point.

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Please be advised that your evening repast may be found situated within the family pet

This blog has been rather quiet of late. I've been away on leave, and although I've had access to the internet I had other things to do and didn't post a single thing.

Since I've been back I've been reading patient leaflets. I proof read them. A lot of people who write leaflets apparently don't have a spell check on their PCs. I check the evidence behind any statements made. I check that the material hasn't been plagiarised (i.e. blatantly copied from elsewhere without permission or proper attribution). I ask tricky questions about the copyright of the various pictures, diagrams and other embellishments that appear. And I despair over the quality of English used.

Why is it that although we manage to use simple words and sentence structures face to face, we get hit by some horrible wordiness every time we put finger to keyboard? If a patient asks where the canteen is you say, "oh - the canteen's on the second floor. Follow the signs to Cafe Blue." If we want to put a paragraph in a leaflet about the canteen we write, "canteen facilities may be found situated upon the second floor." If a patient rings up and asks about bringing their life savings and all their jewellery with them when they are admitted we say, "it's best to leave all your valuables at home. I'm afraid we don't have anywhere really safe to keep them here". If we write that down it transmutes into something awful on the lines of "Please be advised that it is not recommended to bring valuables..." (and I can't even face typing the rest of it.)

For those of you who are Essex Rivers staff there are guidelines on the intranet about patient leaflets. There are plenty of guides on writing patient information. There are plenty of guides on writing simple and straightforward English. My simple tip would be to read - out loud - everything you write. And then see if you can actually imagine saying that to a patient or anyone.

I sometimes feel we have an obsession with writing our own leaflets. Why reinvent the wheel? (Or - in NHS speak - "Do once and share.") Find someone else's evidence-based, up-to-date, well-written leaflet. Then you have two options. Contact them. Ask them to allow you to use their text. Get their written permission. Then make the leaflet your own - add your own logo, your own phone number and so on. Please, please do not try to "improve" the leaflet by adding extra words that really aren't needed.

Option two? Well, why not be really radical and not write a leaflet at all? That's right. Don't write one. Buy in copies of the perfect leaflet you found elsewhere, show your patients how to find it on the internet, or give them a phone number to call for their own copy.

You'll find good quality information for patients in the National Library for Health, at Patient UK and through NHS Choices. For cancer information the major cancer charities produce excellent information and the Great Ormond Street factsheets are useful for childhood illnesses. The American National Institutes for Health are also a good source of straightforward patient information, but these may need to be tweaked to have UK versions of drug names and so on added.

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Testing, testing

The BBC reported on Saturday that junior doctors cheerfully order tests to be carried out even when they know that the results wouldn't mean a thing to them. The report didn't say if juniors were confident that someone else would come along to interpret the test. Perhaps they just feel they ought to be doing something when they are baffled and that patients will be reassured to hear "we're running some tests".

Could patient pressure be to blame? There's a story in today's Telegraph about a little girl diagnosed with cancer. Initially no one seemed to know the cause of her aches and pains and in the end a journalist suggested that the mother "demand blood a test." There is no indication of what kind of blood test - blood can be tested for many things. Is this patient power at an extreme? What else could we demand?

Apparently too many patients demand antibiotics for colds - which are, of course, viral, and therefore do not respond to antibiotics. In the mean time the overuse and abuse of antibiotics leads to ever more horror stories about flesh eating, drug resistant bugs.

Is there a balance needed between the patient's right to be involved and the need to respect the knowledge and training of a doctor or other healthcare professional? On the one hand we have the concept of the expert patient. Most geriatricians aren't old, rheumatologists don't generally have arthritis, and many obstetricians are male. The patient is the person who lives with a disease - especially chronic illness - day in and day out. Surely in some ways they know more about that illness than their healthcare provider?

On the other hand there is the pesky know-it-all patient who has looked up their symptoms on the internet and has only come to tell you what to prescribe for them. My favourite example of this is the cartoon of the chap in his GP's surgery with an internet diagnosis. The GP remarks "I sometimes wonder why I spent 10 years training to become a GP. Your analysis and medication would work perfectly...if you were a goat"

Doctors aren't alone in this. Parents ring up schools to explain to dimwit teachers that they have given their child the wrong grade for their homework or course work. And surely we're all familiar with the joke about the garage tariff with the most expensive price being for work done "with customer's advice"?

One way to help patients be experts rather than pests is to point them towards websites that provide them with good quality health information, like NHS Choices, Patient UK and BBC Health. Help them understand how to evaluate information - perhaps using the QUICK quality information checklist, pointing out the HoN logo or telling them about the Quackwatch site that rounds up and explains the worst urban myths, scare stories, and lies around health.

The other way to avoid the pest is to listen to them and try to work with them, not against them. There are plenty of books on communicating with patients - it really is the key to a good patient/healthcare professional relationship.

And for those of you still struggling with the meaning of lab tests - read up on it in the library. We recommend A Guide to Laboratory Investigations, the Oxford Handbook of Clinical and Laboratory Investigation and Understanding Laboratory Investigations. On the net you'll find the Lab Tests Online resource.

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Grand Rounds

Grand rounds are one of the more esoteric bits of medical education, often involving some sort of free lunch and maybe a case presentation or a journal article.

In blog terms ground rounds is "a weekly rotating carnival of the best of the blogosphere." Each Tuesday a different health-related blogger gathers together other health-related blogs and gives a brief description and a link for each of them. A recent grand round was held on the Path Talk blog. The blogs are written by health workers, and the target audience is "educated but non-medical readers". The purpose is introducing people to the world of medical blogs. As with many things, the focus is American, but if you're looking for a blog on health topics, Blogborygmi (don't ask - I don't know) and Grand Rounds is the place to start.

If you've ever wondered why doctors blog, you're not alone. In fact, a quick Google search shows that nurses, physiotherapists and pretty much everyone else is at it too. Even patients are in on the act. Is this a good thing? Some doctors are concerned that it's not helpful for parents, for example, to include in their blog details of medical care and decisions around care received by their children. But blogs can be a good way to find out how people feel about their treatment and how they experience illness. That can be helpful for those providing care, and for others experiencing the same illness. Whether you've got cancer, hypochondria or a passion for knitting, if you've got internet access you'll never be alone.

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Eliminating the impossible

Counterknowledge. No - not a new word for arithmetic, or the things you need to know to be a successful shop assistant. Counterknowledge, according to Damian Thompson, is "misinformation packaged to look like fact." Apparently we are a gullible bunch and can be persuaded that all sorts of things are true, and it can be blamed on muddled gathering of evidence.

Thompson tells us that counterknowledge is behind conspiracy theories from Dan Brown to Diana, but also exists in health. Everything from belief in the usefulness of fad diets to a fear that MMR causes autism might be defined as counterknowledge.

Half truths work best when based partly on truth - there has to be a grain of credibility to start with. The best urban legends are always stories that happened to someone that you have some connection with. The story teller will also assure you it must be true because it happened to their next door neighbour's best friend's cousin. Even hoax emails tend to be prefaced with "my friend at BigCorporationBank sent this to me" or are apparently originated by a bigwig at Microsoft, Hotmail or elsewhere. We feel better disposed to trust something that comes from a source that is known to us.

Sometimes we believe because we want to hope, especially when we are sick. We want to believe that Aloe Vera, omega 3, coenzymes and carrot juice cure cancer if the alternative is to believe that we are going to die.

Health professionals are not immune to being hoaxed. We must all think as we read and question what we hear. I've mentioned CASP before, which helps you ask questions around evidence you find. The other important thing is to take care where you collect your evidence from. The National Library for Health, Intute, PatientUK, reputable charities are all a better start than the open web for good quality information - clean, clear knowledge. Oh - and did I mention that libraries can look for quality information for you and your patients?

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Ditch the detox

If you are preparing to survive on nothing but green tea and cold showers for the next couple of weeks, think again. Andrew Wrang of the FSA says we needn't bother as our livers can detox our bodies without help.

Mr Wrang makes his comments on his Food Standards Agency blog, which is full of snippets of news on the food we eat.

Mr Wrang's blog has links to the Sense About Science pages, which looks at some of the facts behind the Shock! Horror! headlines of health news stories.

Other resources to combat the hype include the National Library for Health's Hitting the Headlines service and Ben Goldacre's Bad Science blog.

Naturally, the best cure for overindulgence in fake news, hype and scaremongering is good clean news from reliable sources. May we suggest a small dose of your nearest NHS library, to be taken regularly.

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Informing patients

As from today (19th June) there is a new website for patients. Using the existing nhs.ukURL it combines the information from that site (where to find your nearest hospital, GP, dentist, walk in centre) with information on illness and treatments from NHS Direct Online. There will be a third strand around healthy living. The new site is called NHS Choices.

If as a clinician you want somewhere to look for patient information then the National Library for Health includes patient information from NHS Direct online, Patient.co.uk and other good quality sources. If you are looking for information for patients on specific topics (especially cancers) then the major patient charities often have good quality information on their sites. For anything to do with children you can't go far wrong starting with GOSH.