Tuesday, October 27, 2009

Patient views

We've now created a list on the left-hand side for patient and family blogs. Let us know if you have a blog you'd like to be considered for inclusion. We're looking for blogs that are interesting, yes, that share good news and bad alike, yes, and also demonstrate a healthy scepticism about what's in the news and what's pushed at you as cures, treatments and explanations.

That genetic cure for eye-sight

The remarkable story about how doctors have used genetic treatment to restore sight to children came with a great many resources.

This is a graphic that explains the treatment.

And here's another viewing of thevideo of the child demonstrating that he can now find his way round an obstacle course. The following text explains what is happening on the two videos, which were shot three months after treatment: Video 1 shows the child traversing the obstacle course with his left (injected) eye patched. He has difficulty seeing the course and it takes him a long time to complete the test. Video 2, captured within 10 minutes of Video 1, shows the same child traversing a reconfigured obstacle course with right (uninjected) eye patched, using his injected eye for navigation. He has no difficulty completing the test accurately.:

Our news report here

Wednesday, October 21, 2009

Sympathy for the aggregators?

The UK-based news aggregator NewsNow has published a defence of its place on the web in the face of threats of action from established media.

Interestingly when we published a draft manifesto for e-journalism a few weeks ago we put up for discussion two propositions on this issue as we did not think they should be included. (And in spite of quite a lot of interest, nobody has commented! :-;)

These were that:
a) RSS feeds should only contain original writing.
b) Journalists should withdraw cooperation from news aggregators that carry advertising.

This is in effect what is now being considered by major news organisations, along with some potential legal action, placing the business of organisations such as NewsNow in peril.

You must expect us to have mixed feelings on this. These people do get a free ride on the back of working journalists and have certainly made life difficult for us in past years. However they can also perform a useful function, providing a more efficient service than search engines to enable the browser to scan what's going on in the news.

Unlike search engines, aggregators have been able to market specialist RSS feeds to websites - ensuring that none of the fees paid reach the originators of news. Some have very, very aggressive marketing campaigns.

However as a news provider you don't have to participate - and it is true most news organisations have chosen to use aggegation-friendly formats. Until a couple of years ago we did not participate and used a very simple technique to prevent aggregation. That is to keep multiple stories on a single page - ensuring there is no unique URL per story. Now we have changed our format and some of our content can be aggregated.

Any website owner who thinks they are getting the full range of our output by using a third-party aggregator is simply misguided. The news feeds on this site are deliberately selective - interesting and varied, I hope, but selective. In contrast, aggregated RSS feeds tend to be repetitive and lack depth. A typical feed will contain no more than one or two stories, recycled in different formats by different media - with limited or no access to anything that happened as recently as one or two days previously. It sometimes beggars belief that people actually pay for these.

So, at the end, we left just one provision about aggregators in the draft manifesto.

It was this:
12/ News aggregation organisations should be subject to specific monitoring by regulatory authorities for monopolistic power.

No prizes for guessing that we had Google News in mind.

But should propositions a) and b) also be included?

Tuesday, October 6, 2009

That drifting Mediterranean diet

Normally we grab hungrily at stories about the so-called Mediterranean diet. Yesterday we chose to ignore one, which has seized the attention of the world's media.

This was the story that the Mediterranean diet can help relieve depression, from research published by a Spanish team in the Archives of General Psychiatry. The nature of journal, part of the American Medical Association group, probably helped stir interest.

There has been a great deal of analysis of the "Mediterranean diet" recently, mostly originating from Spanish researchers. Here is another recent one. It's all interesting material and is not to be dismissed - as it links a good healthy diet to all sorts of benefits. In this instance we noted the funding source:  The Spanish Government Instituto de Salud Carlos III, Fondo de Investigaciones Sanitarias and the Navarra Regional Government project.

This is how the "Mediterranean diet" was defined for the research: high ratio of monounsaturated fatty acids to saturated fatty acids; moderate intake of alcohol and dairy products; low intake of meat; and high intake of legumes, fruit and nuts, cereals, vegetables and fish. A shorter version stated it was "rich in vegetables, fruits, nuts, whole grains and fish."

I've comment on this drift in definition before. It's increasingly looking as if the Mediterrranean diet is being defined by researchers as a standard "healthy" diet - low in meat and saturated fat and containing only moderate alcohol - rather than as a diet that is recognisably Mediterranean. It creates a circular argument - study a diet known to be "healthy", prove it is "healthy" and link it to a specific region of the world.

Surely the true Mediterranean diet is certainly rich in grain, fruits and vegetable - but specifically it contains large amounts of olive oil, olives and wine. If my memory serves me correctly, this was the kind of diet studied in the original research that defined this diet many years ago. As for the meat content, yes, coastal communities tend to eat fish but do they not raise sheep and goats in the mountains? Choose your dish, Greek moussaka, Italian spaghetti bolognese - it's made with mince from meat.

Arch Gen Psychiatry. 2009;66[10]:1090-1098
Here's our newsfeed on diet and nutrition in health.

Thursday, October 1, 2009

A tough week for health reporting

Two news stories this week in Britain have stirred up some old controversies about the quality and merits of popular reporting on medical matters.

The tragic death of a 14-year-old girl after receiving the new cervical cancer vaccine stirred up all sorts of issues.

So it wasn't long before the critics emerged from the woodwork and accused the media of getting everything wrong or pursuing private agendas (yes, sometimes some newspapers do have their own agendas). Here is a report from The Guardian criticising the reporting of the death of a 14-year-old girl after receiving the HPV vaccine.

A second story has also upset quite a few people - because it implied that households with parents who work full time weren't looking after their children properly. We tucked the report away as four paragraphs in the middle of a round up of child health here. Instinctively, we felt it raised all sorts of social issues rather than establishing any direct health links between parents working and their children's lifestyles. Some British newspapers made a big thing of it and upset many of their readers. Here is blogger Jayne Howarth, (who occasionally writes for Englemed)  letting rip at the research.

The problem with these controversies is it begins to sound as if  some people think these stories should not be reported. For when they are reported, there is always scope for misunderstanding and distortion of facts, on the part of headline writers and editors as well as readers.

I'm not sure that the critics of the reporting of the cervical cancer vaccine story really get the problem. It appears, according to statements released yesterday, that the teenager had an underlying and hidden medical condition - it emerges today it was a cancer in the area of the heart.  Nobody yet knows whether the vaccine - or the shock of vaccination - triggered her collapse. The vaccine is being offered to every teenage girl in the country - so if it is going to cause fatal reactions to hidden "underlying medical conditions", that surely seems a legitimate question of public policy.  And it is a real concern for parents, unless they can be reassured their child does not have "hidden" conditions that won't also cause a big reaction.

The story about working parents is more problematic. Instinctively, it seemed a story that needed treating with caution. Usually in these instances, you can spot the flaw quickly - not many people in the study, other factors, eg smoking, not properly accounted for, dodgy source.  In this instance the number of children involved was quite large, about 12,500 and the source reputable - but it felt as if the phrase "working parents" stood for a load of other issues. Instead we focused on a story from Sweden, published in the same journal, the Journal of Epidemiology and Community Health, about pecking order in the playground. And we took pains the highlight the main query about that particular study - it was from Sweden, which may well not be like other countries.

The NHS Choices analysis of the working parents story was particularly interesting and detailed. It seems to boil down to how the findings are interpreted.

Sometime ago I blogged about some guidelines for assessing medical stories. Dr Alicia White apparently provides analysis for NHS Choices and has published her own guidelines for "reading" medical news, which expand on the theme, stressing, for instance, the difference between studies involving humans and those involving laboratory animals.

In our last posting, about the new world of news reporting on the web, we suggested that writers start learning to show greater respect for the intelligence and education level of their readers.

The problem with debunking all medical reports and all scary headlines is that it gives out a rather old-fashioned and patronising message - that only the experts can make sense of the evidence. That's not the world we live in now - the public is thirsty for information and doesn't always trust 'experts', knowing they are not always right. Sometimes it is true people flit - or tweet - from headline to headline. But if they are interested in a topic, they will dig deep, checking sources and challenging conclusions.

Both readers and writers need to understand one simple thing about medical news: it is that very, very few individual pieces of research change understanding of health and medicine.

Those that do, tend to involve very large numbers of people  - hundreds of thousands. Good doctors and the public health specialists who assess evidence pull together and assess large numbers of pieces of research. Sometimes they are slow to do so and sometimes they get it wrong. Look how long it took for all the problems with hormone replacement therapy to emerge. And how long it took for British government scientists to put a stop to cattle being fed the brains of other cattle. And I'm still not convinced (and here) that British medicine isn't over-reliant on drugs to treat blood pressure when overwhelming evidence from the USA and elsewhere suggests that fitness and good diet can be effective.

So it's no wonder that the public want faster information and they want a chance to decide for themselves. From a reporting point of view, the most helpful medical organisations are those that get in fast with response and explanation. Full praise here to the British Heart Foundation who were quick to challenge a study that could have been read as disputing that eating fish is good for the heart. Report here. But it didn't happen in the case of the Coventry death - and public statements continue to be erratic and poorly sourced.

Another study involved 39,000 people in 29 Asian countries and we blogged on it a few months ago. And it reached the curious and surprising conclusion that those who "trust" the media are the healthiest. A rogue study? Perhaps.Or perhaps an argument for more rather than less health reporting.