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.
Well, as a patient, all this makes me feel very nervous. Because I would much rather be treated to “protocols” and “clinical guidelines” than it be left to the judgement of some random overworked GP who has seen me for 1 minute, not read my file and has no idea of my history or comorbidities.
Dearie me, what a shambles.
It’ll certainly be interesting to see how well the BMJ’s idea works. The momentum to provide patients with opportunities for broader involvement in the research process has been building for many years now – patients can now get involved right at the beginning of studies. See the NIHR INVOLVE website for more details:
http://www.invo.org.uk/find-out-more/getting-involved/
Good heavens! Allowing patients to comment on research? I thought the pharmaceutical companies’ main objective is to make money, not to supply drugs that will be effective (currently 40% as a rule of thumb) and to do no harm to the patient.
Yes, this would be fantastic. Bring it on!
This sounds good, is the medical community in the UK beginning to realise there is a deep structural problem in the way we examine evidence?
I think one of the advantages of the relative anonymity of ‘ordinary people’ examining the evidence is they are less likely to be inhibited when being critical of evidence or opinions presented from ‘credible people’, I think this is less ‘peer review’ and more like an outside inspection from an enemy, I think this brutality in ripping apart theories is exactly what science needs.
The BMJ recognises that ‘evidence-based medicine’ has some serious issues
Unfortunately “evidence based medicine” is, in reality, “Eminence- based-medicine”, as evidenced by the recent attempt to get papers removed from the BMJ.
Also, ‘benefits’ that may be statistically significant may not be very important clinically.
This is very true. Just look at group sizes; if very large it is obvious that the difference between treatment and placebo (or no treatment) is very small. The larger “N” is the more degrees of freedom and the smaller the difference the study can pick up.
This is then “proved” and supports the hypothesis. But there is a the other side – what is the probability that the individual patient. Frequently this probability = > 0.95+, even >0.99. But this is never reported in any form such as NNT.
I would love to sign up as a reviewer. I have had twenty years writing consultant reports for veterinary (and very occasionally medical) drugs for authorization so while an “amateur” in one sense, experienced in another.