It is a term I had not come across until last week.
I believe it is the phrase once used inside train companies to describe you and I, the commuters who throng with fortitude through our stations up and down the land every day. Perhaps it still is, I don’t know.
Such ‘internal’ phrases can be so telling of the culture from which it has emanated can it not? When out in the open they become symbolic of all that is wrong with the organisation and its attitudes to us. Once in common circulation they are difficult if not impossible to shift, to everyone’s detriment.
The phrase has stuck in my mind because I have been giving much thought this week to the ‘message’ we must convey if we wish more people to engage and participate in research.
The use of ‘subject’ rather than ‘participant’ is a good example of the language in common use across research which does little to help incentivise wider participation. Corporately, often only punctuation separates phrases about public engagement and participation from those that refer to growing the economy or strengthening UK plc. Maybe such utilitarianism is a throw-back to the days when we were all trying our hardest to get the best result for researh in the Comprehensive Spending Review (CSR). Or does it go further back? Is it any wonder why my neighbours latch on to the phrase ‘guinea pig’ when we have done little to put something else in its place?
Change this we must, particularly when it comes to clinical research. We really do have to communicate about research and people’s role in it, in much more human terms. We must relate it to people’s care and its potential impact on the care of their fellow citizens. The person and the ‘personal’ must be much more in the foreground. And while charities and others are getting better and better about this, there is still a long way to go.
But to be frank, I am also wary – and weary – of talk of getting the ‘message’ right. For it implies a superficial exercise, a face-lift, something that is only skin-deep: ‘if we could only get our chat-up line better, the dating game would be so much easier.’ Or so the thinking goes.
Deeper changes in our thinking and practice must happen: changes that visibly put ‘respect and dignity’ at the heart of what we do, that convey a commitment to rights as well as an expectation on people to uphold their responsibilities, that link research as firmly to patient experience and patient outcomes as they do to improving our scientific knowledge and understanding.
‘Hand in hand not one before the other’ is the quote that springs to mind.