Nov 10 2008
Why am I just now hearing about this group? Perhaps because they are based in the UK and I am in the US? But the internet makes that transparent. I guess the profile of such groups including my own efforts) is not as high as it needs to be. Even for someone like me, who spends a great deal of time searching for and reading material on science and medicine, a significant group dedicated to the same effort escaped my notice.
In any case – I am glad to learn of them now, through a press release about a new publication of theirs. Here is their mission statement:
Sense About Science is an independent charitable trust. We respond to the misrepresentation of science and scientific evidence on issues that matter to society, from scares about plastic bottles, fluoride and the MMR vaccine to controversies about genetic modification, stem cell research and radiation. We work with scientists and civic groups to promote evidence and scientific reasoning in public discussion.
That sounds like a worthy cause. Today they announced the publication of a guide for patients called I’ve got nothing to lose by trying it. The guide is a response to the increasing number of websites selling dubious treatments to desperate patients. For various reasons, the internet itself being one of them, the flood gates have opened in recent years, and patients facing a terrible illness are now bombarded with recommendations and advertisements for all sorts of worthless, expensive, and at times harmful treatments – at a time when they are most vulnerable.
The publication is available for free download in pdf format. It is chock full of good basic advice for patients, for example:
Journalists take an interest in the development of treatments, but when you hear about new therapies it’s often about research that is at too early a stage to know whether it will be medically useful. Headline writers may pay little attention to the detail of an article in their need for a catchy title, and can imply that cures are just around the corner. In short, results can be exaggerated.
The information in the pdf is all good – if a bit understated. Perhaps it is just the typical British penchant for understatement, or maybe they are trying to take a soft approach. I do think they need to hit a bit harder in places.
I also think they could benefit from those medical experts (like my colleagues at science-based medicine, and Ben Goldacre and David Colquhoun from the UK) who have been writing and thinking about these issues for years. For example, they treat the placebo effect as being primarily a real biological response to the belief that one is being treated, while the majority of a measured placebo effect is better explained as illusory.
They also endorse evidence-based medicine (which I do as well) but seem unaware of the ways in which its weaknesses have been exploited by CAM proponents. Specifically, by eliminating prior plausibility from consideration it present a distorted view of the actual science, which is why a science-based approach is much better.
Well, hopefully we can benefit from cross-fertilization in the future.
Check out their website. They take on celebrity misinformation, common misconceptions, specific treatments, and give worthwhile primers on the nature of clinical evidence and similar topics. Overall, a great resource (even if they need to sharpen their teeth a bit).
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