Going commando in public involvement in health research

Its probably not the done thing for a National Director to applaud direct action.  So I won’t.

But I couldn’t help but warm to the recent appeal by Professor Luke Clements for carers to get in touch with their militant side.  Prof. Clements advised the parliamentary committee that looked at the Care Act.  In his recent talks around the country he’s been saying that the legislation does a great deal of good but essentially appeals to our aspirational side; rather than dealing with the nitty, gritty of what urgently needs to be done.

Half-way through Carers Awareness Week last week – and having listened to a host of very powerful carers stories – I did wonder whether we are letting people off the hook with a good and well-intentioned, but essentially cosmetic, tear in the eye or shallow platitude.

By constantly labelling carers ‘heroes’ do we inadvertently undermine their case by implying that they will go on whatever happens? Has the urgency of their struggle been whitewashed out with soft-focus public relations?  Have we made it easier for people to walk past our ‘heroes’ with the rallying but essentially patronising cry of:  ‘Keep caring, and carry on?’   When what we need to do is stop people in their tracks.

Aye, there’s the rub.

Organisations, systems, cultures, are all good at findings ways to accommodate and essentially smother the radical or the challenging until it becomes acceptable.  It’s no different in public involvement. The well-crafted advisory group with an isolated patient voice.  The agenda or conference programme with a patient on at the end (when everyone has gone home to get an early train).  Choosing to work  only with the corporate voice of patients – a charity CEO who is supposedly  ‘representative’ – rather than bringing a variety of voices together to reflect on their experience.  I think half the time, it’s not even a conscious decision.  And then again….

I try to tell the groups of researchers I speak to that public involvement is at its best when it is allowed the time and space to challenge what they are doing?  In the same way that they would expect their colleagues to challenge them.  And it is at its worst – in fact, worse than useless – when restricted, confined, expected to conform to their rules.  As someone once said at a recent conference I attended:  It must no longer be about how people should serve the system but how the system serves people.

A number of recent campaigns are about prising open some of the long-standing bastions of the science community, not least where and how it meets to talk about our health – yes, when I say ‘our’ I mean you and me.  Like Patients Included which is about ensuring patients are involved in the organisation and delivery of healthcare conferences.  Although I prefer the name of the more irreverent Patient Commando intiative in Canada which has a similar intent.  Creating space for the patient voice to be heard and to challenge.  Raiding the cultural norms around medical research and health care.

Now there’s a thought: ‘going commando.’  But then I know some people will think it’s all fur coat and knickers.

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