This week’s blog is more an advert for two events next week – one very local, and one international – but also an apology.
On Monday, we are holding our annual BRC open day at the John Radcliffe Hospital .
As Professor Keith Channon, BRC Director has said, “Patients and the public are at the heart of what we do, from helping shape the questions we ask to participating in projects and trials. The open day is a way of sharing our work in a fun and interactive way and saying thank you for the support we get”.
Prof Channon is absolutely right, and his comment brings me to the apology mentioned above. One of the things I hear so often from patients involved in research is that they gave their time, the wisdom of their experience, their insights – and that was it.
They never heard what happened in the study they helped devise, they were never told the results of the trial they joined, they were never thanked. I will write more here another time – partly as a call to arms to research colleagues – about the importance of feedback, and linked to this, about a study we will do in the BRC to track how good we have been at publishing our trial results. This really matters, because unless they are published, the medical profession can’t base their care of you and me on all that’s known.
But for now, I would like to say sorry if we have ever worked with you and left you feeling we weren’t grateful, didn’t know what a difference you’d made, and I encourage you to come to the BRC on Monday. Among the exhibits you will can talk to teams about the James Lind Alliance and about our Patients Active in Research Group and take part in some gentle games to help illustrate the value in real patient/professional research partnerships.
My colleagues tell me that you will also be able to find out about how mobile phones, strawberries and a wooden hand-loom are transforming healthcare…so it should be a very interesting afternoon.
Next Tuesday sees International Clinical Trials Day. As last year, the slogan for the day is “It’s OK to Ask” and across the country this means patients being encouraged to ask about research – what it is and how they can get involved. It isn’t an easy message to get across: patients often raise concerns such as “But my GP only has 5 minutes to see me-I can’t start asking about research.” That’s such an understandable concern – and not an easy one to allay – but don’t forget the NHS constitution enshrines your right to be part of a research active NHS.
Start asking, and we’ll start getting better at saying thank you.