What’s your earliest memory of public involvement in research?

Rarely a week goes by without the news reporting that archaeologists have found skeletal remains or cave paintings which tell us something new about the evolution of man.  Each finding, we are told, means we must readjust our thinking about how we have developed as a species. From the moment we first walked, to that day we first took that ferry to Calais to stock up on wine (I made that bit up).

On Monday, prior to the guests arriving for the ‘Involving people in research celebration’ event at the University of Western Australia (UWA), I had a chance to look at one of the displays in the reception room.  It showed the evolution of public involvement here.  I took a (not very good photo) of the display which is embedded in this blog.

timelineIt was a great display.  For all sorts of reasons. Most of all because it illustrated the growing momentum behind the programme.  Each year seemed to bring with it many new milestones and achievements to be marked until one end of the board – the present day – was positively crowded with photos and captions as you can see.

What was also interesting to me was the first date marked on the timeline: ‘1998.’ For it made me think about the year, the day, the moment when public involvement in research began.  When was that?  How did it look? How did it feel?  Of course we know the official historical dates such as the establishment of INVOLVE in 1996.  Or the stories about the protests outside the Medical Research Council in the early nineties by those affected by HIV. But what of earlier?

On Monday evening I met a lovely member of the network who first got involved in research with younger people.  That was in 1988.  Her story reminded me of the gentleman I met at the launch of the new PRIME centre in Cardiff, Wales.  His story went back at least twenty years to when he was a paramedic.  My own tale – for what it is worth – begins in 1995 and the first stirrings of greater public involvement in research at the Alzheimer’s Society.

There must be – in fact I know there are – many hundreds if not thousands of stories like these which each had their own momentum at the time and collectively lead up to those pivotal moments when the personal, the private, the individual, became the collective.

It feels a shame that we have not written these stories up into an official history of the public involvement movement.  Doing so can help to root us more strongly in our origins.  But they can also unearth some surprises that might make us rethink and reassess the here and now.

If you have an early story of public involvement in research do share it in the comments on this blog. Or tweet it.  Or maybe send it to INVOLVE.

I should finish by saying that Involving People in Research at the University of Western Australia launched a new website on Monday and you can find it here.

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