Sorry, did I go off? Do patients have a use by date in research?

Most of my friends and family are often staggered at how complex we have made this supposedly simple thing called public involvement?

How did we end up creating something with more wiring and circuitry than the first computer? Who is going to design the first public involvement microchip that reduces this tangle to something we can all carry around with us without the need for hand baggage?

And, oh boy, do some us of carry around some weighty baggage? It might come from a good place but the result is actually divisive in my opinion.

Talking to people on my travels it is clear that some patients, carers and members of the public are being made to feel surplus to
requirements by their peers because they have somehow reached an imaginary use-by or sell-by date.

The argument goes that they have served public involvement so long, or been on this or that committee for such an extended period of time, that they are now too expert to be a ‘real patient.’ And rather than celebrate and employ their rich insights built up through time and experience, it would be better to throw them and it away – like meat that has gone over.

Funny that, I always thought public involvement was more like a Campbell’s Soup Can: tasty, able to be mass-produced, and lending itself to the iconic artist out there wishing to change the world!

If we want a healthy, growing public involvement movement we need to rid ourselves of this potentially harmful streak. It says more about us than anybody else. There are so many ways we can and should be ensuring our colleagues – new and old – feel wanted and part of us.

There are also tried and tested practical ways to ensure that we maintain the freshness of what we do – from applying good governance principles to conducting meetings or events differently.

I once recall a pop musician being goaded in a radio interview to criticise and make fun of other musicians from different genres. He refused.

His argument was that the union that came from their shared passion for music was stronger. Also that there was plenty of room for the different types of music to live alongside one another. In fact, it was vital they did, he said.

The constant exchange between old and new music – and old and new musicians for that matter – was crucial to the creative process and to the emergence of new ideas.

We don’t go off in public involvement, we ripen with age and experience.

One thought on “Sorry, did I go off? Do patients have a use by date in research?

  1. Completely agree. At the risk of being provocative… Could it be that for some the confident, informed, insightful patient is too threatening?


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