I’ve long believed that if we want to make true advances in medical care, the views of patients and ‘ordinary people’ need to be taken more into account. I sometimes think that too much research is driven by self-serving interests (sometimes financial, sometimes not), and that the people supposed to benefit get marginalised or completely forgotten.
Soon after graduating from medical school, I bumped into someone who had graduated a year before me. She waxed lyrical about a lecture tour of the US she was about to embark on to discuss the ‘exciting’ new medical research she had been involved with as part of a PhD. I forget the details, but I remember asking how this research would translate into improved patient outcomes. Her response was that it wouldn’t. Then she laughed. This is a rather extreme example, I think, of how researchers (and those who fund research) can sometimes forget what medicine is for.
In the past, I think one of the problems is that the medical and research fraternities viewed ‘ordinary people’ as lacking the skills required to understand and contribute positively to research. If that was the case in the past, this is clearly much less of an issue now. And that’s because there are growing numbers of individuals who have, in effect, educated themselves on matters such as the scientific method and the relevance of different types of study. I honestly believe that ‘complete amateurs’ often have a much better grasp of the issues than the ‘professionals’.
Let me give you an example. On the BMJ website recently I watched a brief video in which a US-based researcher was talking about research in which a high cereal fibre diet was found to be associated with better outcomes after a heart attack. The researcher confidently stated that patients should be told to up their fibre intake as this will help them. Except that the nature of this study (epidemiological) does not allow him to be so confident about the relevance of his findings and it appropriateness to patient care. On the other hand, there are many people with no background in research at all who would be able to spot this researcher’s error in an instant, and might be happy to make their views known too.
I was delighted this week to get an email from a frequent commenter here (Chris Palmer) to a BMJ blog about a very patient-centred initiative which you can read here.
The BMJ recognises that ‘evidence-based medicine’ has some serious issues. For example, the evidence base for some drugs is very skewed (I’d say the evidence on statins is a prime example). Also, ‘benefits’ that may be statistically significant may not be very important clinically. The suggestion is to make medicine more ‘patient-centred’, and use clinical judgement to apply the evidence to the individual, perhaps releasing doctors from the tyranny of ‘clinical guidelines’ and ‘protocols’.
But the BMJ has taken a bolder step in planning the involvement of patients in the review of studies being considered for publication (so-called ‘peer review’). The article I link to above includes a short video which explains how someone can sign up as a ‘peer reviewer’ with the BMJ. If you feel sufficiently moved, then please do sign up. And, if you so feel inclined, please do whatever you can to promote and support this initiative. I applaud the BMJ for remembering those for whom medicine should primarily exist.