What was it that the author, William Golding, said when asked if he went to church? ‘No I don’t, and I don’t think God does either.’
I feel the same about medical research conferences. They often seem to be places where people go to worship the science rather than what it can do for people.
The dilemma for patients and the public is that we know these cathedrals of science can be where a whole new testament for treatment and care is written.
So we seek to go along only to find ourselves knocking on a closed door. Or allowed in but not permitted to take part.Sometimes we get to sing a small part on a panel. Occasionally we are allowed to give a reading. It is better than it was but not greatly.
Thankfully there are people turning this tired pantomime and the stale format that results, on its head. Yesterday’s ‘Generation R’ event was an exemplar of how things could and should be.
The event – and it really was an event – was designed and run by members of the Medicines for Children Research Network (MCRN) Young Persons Advisory Group @MCRNYPAG. Some have been participants in research. All are involved in its design and delivery. Their energy for the subject is palpable. Yep, that’s right, they see science rather than themselves as the subject of study.
What’s not to like about an event where you are greeted by smiling young people in ‘Red for Research’ t-shirts, can drink science cocktails in the afternoon, told that suits are not allowed, and are invited to think differently for a change?
It was the decision to run the morning in a tv show format that was the smartest move by these young people. Instead of death by PowerPoint we were involved in a a flowing discussion. Themes were allowed to unfold and develop. Should young people receive payment for taking part in research we were asked. Some said yes. A girl spoke passionately from the floor: ‘Knowing it benefits other people is enough of a payment for me.’ And in one sentence impassioned us all.
The Chief Medical Officer, Professor Dame Sally Davies, was just one of many who was interviewed on the TV sofa. The afternoon saw delegates discuss a diverse range of topics. From how to get people’s consent to take part in research in emergency medicine, to how to raise awareness of research among young people.
Candour was aplenty. So was laughter. We had reportage from around the country and even a weather forecast promising sunny spells for public involvement.
If young people have anything to do with it I think we might actually have a heatwave.