I don’t think there’s anyone in the UK more passionate about patient participation in clinical research than Simon Denegri, the Chair of Involve and the NIHR National Director for Public Participation. I recently had the pleasure of sitting down and talking with Simon about his plans for next year, which include an update of the UK Clinical Trials Gateway and a big patient outreach campaign, ‘Ok to Ask‘.
As Simon points out, under the NHS Constitution patients have a right to be informed of research studies in which they may be eligible to participate.
An important part of making this right a reality is bringing patients, researchers, the public sector and the private sector together to collaborate. As part of World Poetry Day, Simon wrote a poem about the experience of a patient participating in clinical research and the power of working together. We have reproduced it here with his kind permission.
If we work together
We can do it better
This thing called research.
So here I am
Neither subject nor guinea pig
With no letters after my name.
But I know a thing or two.
About what it’s like.
About what it’s really like.
And all I ask
Is that you let me ask
Why, when, who and what for?
I’ll work with you on a cure
Although I’ll be long dead by then I’m sure
(But who knows we might get lucky).
If you’ll also help me with the pain
And making the day
Worth waking for.
For when dusk does night betray
I want to be able to say
I made a difference for me, for you, for us.
Now that we are working together
Wouldn’t you say
This thing called life.