Musings about badges and labels and that term ‘human guinea pig:’ what would your bumper sticker say as a patient in research?

How wonderful to see UK nurse Pauline Cafferkey discharged from hospital over the weekend having made a full recovery from Ebola.

You may remember that, on New Year’s Day as Pauline’s condition worsened, the papers were full of the fact that she was to be treated
with a new drug. I think the time-dishonoured phrase the papers used was ‘guinea-pig.’

To quote the BBC News coverage this weekend as part of an interview Pauline had given, she was ‘treated with blood plasma from an Ebola
survivor and an experimental treatment drug closely related to ZMapp, which UK nurse Will Pooley was treated with after he contracted
Ebola.’   It is an amazing story that deserves much more attention than it has got.

Closer to home, a number of good friends and colleagues have been entered into clinical trials as part of the care they are receiving.
In some cases, more than one. ‘Is there a badge that goes with it?’ I asked one such colleague.

Actually that’s not such a bad idea is it: if we want to raise awareness of the importance of people volunteering to take part in
research why not promote a badge to indicate we have taken part?

The ‘bumper sticker’ or equivalent – (perhaps it’s the hashtag on twitter which reminds me to ask you to join and follow the latest campaign going viral: #whywedoresearch) – is now a common way of saying something about ourselves, our status, and what is important to us isn’t it?  Our charities promote different coloured ribbons, wrist bands, and badges for their awareness days/weeks/months.  Then there are the traditional lapel stickers given out on the High Street.  All have the same purpose although their style and tone can vary massively.

From the softly spoken request that we show consideration for the ‘Baby on Board’ (I seem to remember Ben Elton once doing a masterful
demolition of this cultural statement on Saturday Night Live in the eighties), for instance, to the humorous ‘My other car is a Mercedes’ sticker
displayed on a Reliant Robin. And everything in between of course.  It’s got to be pitched right if it is to gain support, hasn’t it?

Then there are those who display National Trust emblems, or small dangly football shirts from their rear view mirror. Others go simply for a
campaign such as slogan: ‘Stop the Warmington-on-Sea Bypass.’When I worked for the Alzheimer’s Society in the nineties there was a former carer whose car was adorned with Society logos and slogans. He  was a ‘Dementia Friend’ long before we had even heard of David Cameron.  I am not sure brand experts have it in  themselves to embrace the energy of such mavericks in the way we once did.

In clinical research we have our own ‘OK to ask’ emblem of course.  It seems to be getting more and more exposure every day and pops up on all sorts of giveaways particularly at conferences.  My latest is an ‘OK to ask’ key ring. In the meantime others round the world also seem to be adopting it. But it’s more of an invitation to approach than a declaration.

So, what if you had been on a trial or in research, what would your bumper sticker say: ‘I’m in a trial, are you,’ ‘I love clinical research?’ ‘I’m a living experiment,’ ‘Keep calm and enter a clinical trial?’  You tell me.

And what about that term ‘human guinea pig?’

If you read the accounts of Archibald McIndoe’s patients who underwent pioneering plastic surgery in East Grinstead during WW2 (just down the road from me) you will know how these individuals turned the phrase on in its head. They found a sense of belonging, community and resolve through their experience and fiercely rejected the everyday reality of isolation and rejection. You might argue that similar has happened in mental health with the use of the word ‘mad’ which has been thrown  so effectively back in the face of those promoting stigma and discrimination.  Other examples exist from across the disability movement.

I see the same happening in research.  This is a nice article on the subject from The Guardian a little while ago.  There’s even courses on the subject.  But, more importantly, it is being used by some as the groundling on which to base an angry rejection of some of the underlying assumptions that are still made about so-called  ‘subjects’ of research.  This is an interesting summary of the debate if you have time.

I agree with the view expressed in this piece that the term is therefore regarded as either a ‘totem or scarecrow’ depending on who you talk to.  The article is also helpful in giving a fascinating insight into how the use of the term has developed over time and why it has stuck.  See also this article from the BMJ in 1990 via PubMed Central.

But, whatever your view of it, whether you love or loathe it, it won’t go away until we replace it with a badge that better captures what we are about.

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