Patient and public involvement has many reasons to feel kinship with the suffragettes

It is a hundred years today that women won the right to vote.

I for one enjoyed this morning’s special edition of BBC Radio 4’s Today Programme from Westminster.

My only regret was that Barbara Castle – my all-time political hero – was not one of the ‘most influential’ women of the last 100 years you could vote for in their poll.

Reflecting on this morning’s programme, I feel there are many parallels and learnings that public involvement can take from the suffragettes and their struggle.

Public involvement in research is a movement whose ultimate aim is to gain decision-making rights – voting rights – in the field of science. It is about breaking down the way that power is distributed and used in science. We should never forget this – however much people try to hide it behind engaging finery or the uniform of participation.

It would be disingenuous to pretend that this use of power doesn’t have anything to do with the fact that, until recently, men have dominated science, its attitudes and culture. Or that is has nothing to do with the fact that the leadership of science institutions and organisations has been predominantly male, white and middle-aged with all the associated hierarchies that means.

I have seen patients and carers belittled, patronised and, yes, sometimes verbally harangued for speaking out or simply questioning the prevailing view in a room full of the grey-suited. It still happens today – only more subtly but no less harmfully.

And, personally, I think it’s no coincidence that, when asked by the BMJ in a recent interview, who the most influential doctors had been in my career I chose two women – Dames Sally Davies and Carol Black – principally because I had seen them actively involve patients in their decision-making. The experience of being excluded is a powerful unifier.

A generalisation? Am I going too far? You are perhaps right. Thankfully things are changing. But I sense that I am treading on an agenda that I am ill-qualified to comment on, and on a day of celebration.

So here’s another – I might as well dig myself deeper into that hole mightn’t I!

From my experience of speaking at many public involvement meetings, I would say that women outnumber men in public involvement meetings by at least 2 to 1. I am not aware of a study of the reasons why this is so, but I am sure we might conjecture why. Most of the PPI leads in the NIHR are women. All the Directors of INVOLVE since it started have been women and it now has Tina Coldham as its Chair.

It is the fashion these days – me included – to talk about this community profile as if it is a bad thing. We need diversity! We shout. And so we do.

But shouldn’t we actually celebrate the role of women in the public involvement movement; the leadership role they have played in changing the culture of research? After all, I shudder to think where we would be without their activism.

Simon Denegri
Sent from my Work iPhone
You can also find me at:
Twitter: @SDenegri
Blog: https://simondenegri.com/

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