Saturday, 4 December 2010

A step by step guide to a 'revolutionary treatment'

This was part of an episode of the Pod Delusion a few weeks ago. Meant to put it up here then. Forgot. Doing it now. Don't worry, it's no more-or-less relevant now than it was then.

The following semi-coherent diatribe is step-by-step guide about how a ‘revolutionary treatment’ or ‘medical breakthrough’ comes into being in today’s society. What follows is theoretical chain of events based on my own experiences and understanding. As far as I know, these events has never actually happened as detailed here. As far as I know. But as far as I know, they easily could. As far as I know.

Step 1: Researcher A completes a research project. The project in question investigates the effect of substance A on biological process A. Biological process A is one of dozens that contribute to unpleasant disease X. Researcher A’s results indicate that substance A significantly reduces the rate at which biological process A occurs when administered to a small group of subjects that have been genetically modified so that process A occurs in them. The subjects are members of species A. Otherwise known as mice, because they definitely do exist.

Step 2: Researcher A, having spent 6 months on the project, writes it up as a paper for submission to a relevant scientific journal. He then forwards it to his immediate superior for checking before it is submitted. He then goes out to celebrate, become dangerously inebriated by consuming excessive amounts of alcoholic substance A, tries to chat up unknown attractive woman A, makes several appalling conversational errors due to drunkenness, eventually receives a vicious kick to testicles A and B, then limps home and sleeps for 18 hours straight.

Step 3: Researcher A’s immediate superior, Professor A, eventually reviews researcher A’s paper and considers it sound. However, Professor A is also putting together a large grant proposal and is keen to cite impressive research his department has produced, in order to improve its chances. As soon as the paper is accepted into a journal, Professor A sends an email detailing (and somewhat exaggerating) the results and implications of researcher A’s project. He includes the role of process A in disease X. The email is sent to the public relations department of his institution (Institution A), with the intention of getting his department some publicity, which could potentially aid his grant proposal.

Step 4: The public relations department, understaffed and underfunded after recent budget cuts, are similarly keen to gain attention for institute A and hopefully obtain extra funding. They quickly read Professor A’s email, and after adjusting it for succinctness by removing some of the ‘minor details’ they include it in their regular press release, which is sent to a wide variety of media sources.

Step 5: Journalists at a number of media outlets receive institute A’s press release. Several of the less-scientifically literate journalists read through it quickly and notice the phrases “results show” “substance A” “reduces occurrence of process A” “which is” “an” “important” “part of” “disease X”. There is also a collection of numerical results and analyses accompanying this, but numbers are boring and tend to put readers/listeners off so these are ignored. Many of the journalists know a relative/acquaintance/celebrity who was a victim of disease X, ergo many people must know/care about it. Logically, this discovery is newsworthy.

Step 6: After the story is passed between seeral people, becoming distorted with each retelling, public relations department at institute A receive dozens of phone calls regarding the discovery of a cure for disease X. After 2 hours of noncommittal responses made in purely to buy time, someone in the department recalls mention of disease X in the recent press release. This is traced to professor A, and all subsequent requests for information are directed to his office.

Step 7: Professor A spends an afternoon responding to enquiries from journalists about his ‘discovering a cure for disease X’. Mindful of the danger of making unsubstantiated claims, but also aware of the positive effect publicity could have on his grant application, he responds cautiously, but plays up the possible implications of the research while downplaying the fact that it is just a small result from a small study on a small component of a complicated disease, expressed entirely via an analogue of the disease as experienced by a non-human species. Mice, in this case.

Step 8: Professor B, of institute B, who is widely known for his work on disease Y (which affects similar areas to disease X) is contacted by journalists and asked for his opinion on professor A’s ‘revolutionary treatment’. Professor B, currently on holiday in Cannes, points out that he has not seen the findings of the experiment, is not an expert in the area in question, and doesn’t actually know who it is calling him and interrupting his holiday. After much cajoling, he admits that the results sound ‘intriguing’ but expresses his doubts at the ‘cure’ claims, given the scant information provided to him. Following several calls of this nature, he experiences an uneasy feeling for the rest of the day. He switches his phone off for the rest of the trip, and then spends 2 days on the toilet, as his uneasy feeling resulted in him being distracted and eating shellfish, which he had forgotten he was allergic to.

Step 9: A news story hits the media outlets about the new ‘revolutionary treatment’ for disease X, accompanied by pictures of a celebrity sufferer. The story is reported via each source in a manner alarmingly similar to the original press release, but with the removal of much of the data and experimental description, and with the inclusion of ‘criticism from professor B’ and a great deal of worrying but ultimately irrelevant statistics about the prevalence of disease X in society. In some media source, names and pictures of a few more famous sufferers are also included as an afterthought, mostly female ones who have at some point in their careers been photographed wearing a bikini.

Step 10: A nightly news programme features the ‘revolutionary treatment’ as part of the news round-up. Researcher A, watching this in his pants while eating corn-based chip-snack 'A' at home, recognises some of the terms and names used, but concludes that it can’t be anything to do with his research; he wasn’t investigating anything so ground-breaking (process A only occurs in disease X in 15% of reported cases at any rate), and anyway, somebody would surely have told him if his research was in the news. Surely…?

Step 11: Support groups for sufferers of disease X welcome news of the new treatment, substance A. However, they react angrily when they discover that it is not readily available on the NHS. Attempts are made by representatives to explain that the NHS does not treat patients with untested, unproven substances that are not readily available and would only work on a small percentage of sufferers if they were. However, the only aspect of this that registers is the term ‘small percentage of sufferers’. Accusations abound about the NHS sacrificing people in order to save money.

Step 12: Professor A is more regularly contacted by people asking him to explain or defend things he never actually said. Other experts in his field criticise Professor A for his ‘self-aggrandising’, ‘dangerous exaggerations’ and ‘bringing the profession into disrepute by potentially costing lives in order to satisfy his own ego’. This means he is dropped as a speaker form several conferences. After every third phone call or email, he finds himself searching the job vacancy listings for anything with the word ‘farm’, ‘library’ or ‘monastery’ in it.

Step 13: In response to the extensive media coverage of the ‘revolutionary cure’ for disease X, GPs report a significant increase in patients claiming to be suffering symptoms of disease X. Although disease X is a complex one with features and symptoms varying between sufferers, the symptoms reported correspond significantly to the ones described in the more popular results provided when ‘disease X’ is googled. GPs attempting to suggest a psychosomatic issue (as well as pointing out that ‘revolutionary treatment’ substance A is only shown to affect one facet of the disease in specially bred mice who don’t actually suffer from disease X in the strictest sense) become the subject of a media campaign attacking ‘uncaring, unfeeling health professionals’. This campaign has the opposite effect to that which is presumably intended, as it increases the level of contempt GP’s feel toward typical patients, and the general public overall.

Step 14: The journal in which researcher A’s original paper was published report that the paper has been requested/downloaded no more or less than what is typical for a paper in that area.

Step 15: Researcher A begins a new project, studying the effect of substance B on process A. He notices no change in his daily life, except that Professor A doesn’t answer many of his emails any more.

Step 16: The shadow government accuse the government of ‘spending lives, rather than money’ by neglecting to provide substance A on the NHS. The fact that ‘providing a relatively unknown substance which has not been deemed fit for human use to sick patients’ is a perfectly acceptable method of not risking lives is never mentioned by either political party.

Step 17: A pharmaceutical company that began a ridiculously accelerated drug development project to develop and patent a substance A based treatment for disease X decides that the marketing opportunity has passed. The project is slowed, and then abandoned as the realisation occurs that the accumulated data was obtained via such a rushed and haphazard method that it is effectively useless.

Step 18: Interest in substance A as a cure for disease X abruptly vanishes when researcher B at institute J discovers that common substance epsilon may contribute to disease J. The media then focuses on that for a total of two weeks, then lose interest entirely as a famous posh person reveals that they are engaged to a slightly less famous posh person.

Step 19: Researcher A begins actively asking people in his department where Professor A is. He is told that he is ‘on sabbatical in Nepal’, probably not returning. Researcher A is offered his vacant job. Researcher A is confused, but accepts. Occasionally he receives emails asking him to speak as ‘the discoverer of the cure for disease X’. He deletes them immediately, assuming that they’re spam.

Step 20: Disease X effectively dies out as, over time, an effective vaccine is developed. This is not given the same level of media coverage as the supposed ‘revolutionary cure’ as 1) it was a gradual development, and 2) a vaccine makes sure something doesn’t occur; thing’s not occurring are not newsworthy.

Step 21: Disease X sees a sudden resurgence when, years later, a ‘maverick doctor’ makes a fatuous link between the vaccine and illiteracy in children.


Anonymous said...

This is perhaps best also illustrated by the excellent PhDcomics:

FrankO said...

This is very funny, but it's nowhere near the reality. Why wait for someone to have done research showing compound A inhibits process A? There are tons of university press releases that become interpreted as someone discovering a cure based only on the hard fact that a scientist has just got a grant to study process A.
You are operating far too close to the reality of a possibly genuine discovery: your premise is that someone found an effect of something on something else: but that's a genuine finding. What about when someone discovers a gene (really meaning they've discovered a SNP in a gene) that has a relation to one component of a multifactorial disease? This finding (or receipt of a grant to investigate a gene sequence) will provide new targets for design of drugs against the disease. PA people ignore the fact that nobody can really design drugs at will, and that the track record of genomics contributing to drug discovery after some 15 years is really quite pathetic.

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