Sunday, 26 October 2008

In Science We Trust: without free public access to the data, belief is all we have.

I was talking to a colleague about the relative benefits of alternative and conventional medicine on Friday and realised, quite quickly, that I didn't have a leg to stand on. As I've hopefully made clear in previous posts, I place my trust in evidence-based medicine; I'd much rather swallow or inject a substance (naturally occurring or otherwise) that has proven effects and recorded, minimised side effects than something about which little or no data has been formally collected. Unfortunately I don't have access to a lot of the research and even if I did, it would take a very long time for me to read and understand it (particularly if I'm ill and panicking, which tends to affect my ability to assess the statistics).

So my trust in science can't happen directly - I have to place my trust in people. I have to believe that the data has been collected and assessed properly, that the sources I have access to are reporting the findings accurately, that policy decisions within the health system have been based purely on the most accurate information, and that my doctor has taken absolutely everything into consideration when diagnosing and prescribing.

The end users of conventional or alternative medicine suffer from a serious lack of the source data needed to make a fully informed choice. For every genuinely useful study reported in the media to prove one thing, there'll be a dubious one (or even a good one) claiming to prove the opposite. Thanks to the woolly and simplistic media coverage and journals which only provide an impenetrable abstract for free, the lay person has no way to tell by themselves which study produced the more reliable result. For many people, myself included, the decision to go for a conventional or alternative treatment is based on a tiny amount of information, and bucket loads of trust.

Looked at from the outside, science seems very elitist and self-protecting. This impression is reinforced when there's a focus on misuse of the 'Doctor' title or degrees popping up that claim to be science but don't quite measure up. As I wrote in a previous post, science is really about the method and not the people. Information should be judged on the methods used to obtain it, not the qualifications of the person who reports it. Unfortunately, the news reports about science and medicine rely very strongly on the perceived authority of the source.

People inside the world of science are understandably frustrated by claims that the scientific method is not the standard by which everything should be judged. To outsiders, science's perceived attitude of "believing in something is stupid, you just have to accept that we're right" seems arrogant, elitist, cold, and somewhat hypocritical whereas a sales pitch along the lines of "this treatment may be right for you, let's try and see, if you're not happy we can try something else, guaranteed no dangerous side-effects" seems warmer and more intuitive and is easier to trust. When we choose an 'alternative', we feel like we're making an informed choice, while few people feel well-informed about conventional medicines or feel like they really have a choice in what happens to them.

Couple all this with the reports of dubious practices within the pharmaceutical industry, terrible, personal stories of mistakes made by doctors, the general impression that the NHS is falling apart and that no-one within it has a clue what they're doing and only want to get paid well and retire early - it's easy to see why there are so many conspiracy theories about conventional medicine out there, and so many people ready to believe them.

The end user, the patient, is faced with two systems. From the point of few of an individual, both systems have their risks: misdiagnosis, failed treatments, mistakes, malpractice and so on. Each system provides information which contradicts information from the other system and it's virtually impossible, with the time and sources available, to assess the accuracy of this information. The decision the end user makes is almost entirely based on which people they believe and trust.

In my case, I've invested my time in attempts to get beyond newspaper headlines and advertisements, to try to understand what everything means, what claims can be legally made by pill companies on both sides of the line, how statistics are and should be reported, and many other issues. I place my trust in conventional medicine because - based on everything I've read - it seems better regulated and better at learning from its mistakes. Other people are hesitant to place their trust in a group of people who seem to hoover up funding, hoard the resulting information behind pay walls, insult people who don't have the same qualifications as they do, don't have time to listen to people's concerns, and generally present a united and closed front to the outside world.

There are many, many reasons why science and scientists aren't trusted as much as they deserve. A good start at solving the problem would be to make more research papers available to the general public, written up in a way which doesn't take a decade of university education to understand. No articles should be written about new research without clear information about where this research can be found by readers. The same should definitely apply to advertisements from companies on both sides of the fence. This way, trust and belief will no longer have to be the deciding factors in patients' decisions.

Here's an example of what I mean. To some customers, an invitation to do their own research into the possible benefits of a product might sound empowering and flattering. It might reinforce the impression that the patient / alternative therapist relationship is more equal and open that that of patient / doctor. In reality, telling someone they can find the information on the internet is like telling them to ask someone in the street, or to toss a coin, or open a valued book of their choice at a random page and interpret a few lines of text. Unless you work in the relevant field, the information has to come third, fourth, twentieth hand.

Extra! First direct quote! Nellie the Arts Grad has been looking into Ben Goldacre's humanity grad phobia in more detail than I can be bothered to and raises some important concerns about his book.

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