A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming

If only petrol was as plentiful a resource as public attitudes.  There is no end to the extent to which we can mine what the public thinks about this, or that.

Occasionally a survey will hit a rich seam of information and insight.  Then again, so numerous are those who are drilling into the public mindset nowadays, that I fear the small nuggets of interest reaching the surface are not without risk.  How long, I wonder, before the mountainous scree of data and information of dubious solidity reaches such a height that it obscures our horizon?

Heh ho! We can but hope that each in turn will move us a little further forward to where we want to get too, and that none do too much harm.  Have they asked the right questions, is it actionable, can we do something with this? These are the questions we should ask of such forays into the public consciousness?  And these two surveys do take us a little bit further forward I think…

Last week PatientView published the results of a survey it has conducted of 400 patient groups on the question of: what do patients value in healthcare?  There are some thought-provoking results embedded within it.  The fact that patients rate relief from symptoms and pain as highly, if not more so, than treatments which increase life expectancy is an affirmation of an issue that has long been articulated in the patient community.  Of all the money spent on researching new treatments and interventions, how much might be better directed at studying and mitigating the consequences of illness which impair a person’s quality of life?  Or simply making those innovations whose worth is already proven work better in the field – as Richard Smith, the former editor of the British Medical Journal (BMJ) suggests in his eloquent blog this week.

This week, I went to a preview of the results of a new report by the Wellcome Trust and the Medical Research Council (MRC) which will be published online shortly, entitled: “Assessing Public Attitudes to Health Related Findings in Research” this week.

It doesn’t quite do what it says on the tin because you could take that title to refer to giving feedback generally to participants in research?  (It doesn’t happen in case you are wondering).  In fact, the report is an examination – through survey and deliberative work with the public as conducted by Opinion Health – of people’s attitudes as to what should happen if researchers and clinicans discover something that has direct significance for the health of someone involved in a study.  I’ll let you read the findings for yourself in due course as they are worth reading as at least the basis for discussion on what should happen in this tricky area.

To be honest I was more absorbed by the mood music of the audience discussion afterwards: the view expressed by more than a few that ‘informed consent‘ for patients is a myth given that doctors are often making an informed guess about diagnosis and treatment; the sense that these dilemmas are not new ones to us but that the real difference is the amount, and  pace, of research and discovery and our capacity and capability to deal with the issues on such a scale and; that there is a need to think in terms of patient rights rather than patient preferences.

The most salient remark, however, was that perhaps we have reached a point where we need to re-think the way we do research; that it should no longer be seen as something that specialists do but should be conceived as the product of an evolutionary partnership between patients and researchers.  Actually, it wasn’t so much the remark that made me prick up my ears as the fact that it came from one of the industry representatives in the room.

There is much to praise about the two studies above.  But if only I could say the same of others.  For I do find myself coming away from reading or hearing other surveys feeling that the underlying premise for them is wrong and what they show, next to useless.

If I had a ‘£’ for every survey that reputedly showed the public doesn’t understand medical research or science I’d be able to open my own version of the Wellcome Collection.   But I wouldn’t know what to put in it because the question is often put so generally that the answer can’t possibly tell me much.  What don’t they understand: it’s value, the difference it can make to lives, why it is an important part of what the NHS does, why they need to take a certain medicine for their condition? Or do you mean how an MRI scan works, or the genetics of Alzhiemer’s?  If so, that’s a bit like saying you don’t understand football because you can’t relate the off-side rule in all its glorious detail.   However, we can’t really debate this further because the question doesn’t allow us.  Shame that.  But don’t worry, it probably props up a lot of misdirected or public engagement work so that’s ok.  Actually, it really is a shame.

Perhaps we need to give the public a bit more credit, beginning with the questions we ask of them.

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