Monday, February 27, 2006

Amdedo challenge

I've been juggling various stories as potential options for opening the first chapter of my book. One provisional option is the issue of open access to medical information. A very rough draft of the possible opening:

"In 1998 the British Medical Journal (BMJ), based on the principle of facilitating free and unrestricted access to scientific information, decided to make the entire contents of the journal freely available on the Internet. By January 2005, due to a drop in income, the journal partly reversed that decision, making some of the contents accessible online only to paying subscribers, though many elements of the journal such as a selection of research articles remained freely available at In February 2006, the BMJ published the results of a survey ‘To determine whether free access to research articles on is an important factor in authors' decisions on whether to submit to the BMJ, whether the introduction of access controls to part of the BMJ's content has influenced authors' perceptions of the journal, and whether the introduction of further access controls would influence authors' perceptions.’

It was a relatively small survey with a little over 200 authors participating but the results suggested free online access was important to a large majority (75%) of them, so the publishers agreed to retain their partial open access policy for the time being.

Other important medical journals, like The Lancet, only provide online access to paying subscribers. Hundreds of other science and medical journals offer a variety of access approaches between the BMJ’s initial completely open access and The Lancet’s closed access policies. Some give you a trial free period after which you have to pay; some offer some articles freely, or for a limited period, or a number of years after the original publication; some sell individual articles separately to non subscribers. The range of approaches is huge and somewhat confusing.

In recent years the UK government has been very interested in pursuing the concept of ‘patient choice’ in the National Health Service e.g. choosing your GP and what hospital you would like to have your operation at. To an even greater extent in the US there has been a focus on “consumer-driven health care,” with personal healthcare plans, insurance and saving accounts.

So is putting complex personal healthcare decisions in the hands of the individual a good idea? Well to a large degree that depends on the capacity of the individual to make informed decisions about the management of their health and in the context of the circumstances within which we find ourselves having to make those decisions. We don’t diagnose on manage complex illnesses or medical emergencies on a daily basis and neither have we received the formal medical training to do so. If I do find myself or a member of my family facing a serious medical emergency, I want access to a doctor who has successfully dealt with the condition thousands of times previously, who can make a rapid diagnosis, prescribe the most effective treatment and explain her carefully thought out, well worn options for managing the aftercare towards a full recovery, once the worst is over.

What about if I have a bit more time to do some research and find out a bit more about say an ongoing chronic condition? A friend of mine with a hip complaint went to great lengths to research his condition and ended up impressing his doctor with the depth of his knowledge on the subject. But supposing the materials he read had not been as freely available as they had been and he had to pay The Lancet, the BMJ and hundreds of other sources a hefty fee for each article he read, would he have had the ability to make the decisions he did about his treatment? Doctors could justifiably claim that most lay people are insufficiently well trained to understand even the language of medics or the reliability of the sources, especially on the Internet, from which we might derive much of this medical ‘information.’ And if the truly reliable peer reviewed sources like the BMJ do gradually move towards a subscription only service, where is the average patient going to get access to important medical information required to make informed healthcare choices?

Well it looks as though, for the moment at least, the BMJ will remain at least partly open, due to the commitment of journal’s contributors to making medical research freely available. On balance that is a good thing but this book is not really about healthcare or medical journals. It is about decision making related to and involving important socio-technological information systems. Information systems which have a considerable impact on public welfare are being created, deployed and regulated without a fundamental understanding about what these systems are required to do, (or even, in many cases, that it is an information system rather than just information technology that is being deployed)."

The material then goes on to outline the two ideas in the book and its structure. The reason I mention it even though the draft is barely presentable is that I've just come across Amedeo Challenge sponsored by Bernd Sebastian Kamps who is offering prizes to physicians who write and publish free medical textbooks. I also know there is a lot of unsung work going on in this area and would be interested in any significant projects B2f readers could point me to. Any comments you might have on the above draft would also be welcome.

Thanks to Peter Suber for the link to Amedo Challenge.

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