I am often asked whether it is difficult – if not impossible – to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public.
My answer is that it might be difficult but it can be done. And the benefits can be significant. The real challenges are to be clear about the purpose of this involvement, to identify where it can make a difference, and to identify the right methods for making it work in practice.
Earlier this year I sat on an EU funding panel in the neurosciences. We looked at a wide variety of applications – from public health to basic science in a laboratory. It was striking to me that the basic scientists often put together more exciting and imaginative public involvement plans than their colleagues in other fields who should’ve known better. It was as if they were rising to the challenge; they wanted to prove those wrong who say that the lab is no place for the public.
I seem to recall that, for some years, the MS Society ran a buddy scheme in which MS sufferers were teamed-up with lab-based researchers. The partnership they developed over time became a motivational force for the researchers who had often never met a person with MS before. Equally the people with MS felt empowered by the knowledge and understanding they gained. They became impressive ambassadors for the charity’s research work.
I am delighted to say that a little known but very important group in the world of public involvement – the ‘User Involvement in Voluntary Organisations – Shared Learning Group’ (which brings together charities and voluntary organisation pioneering public involvement work) – has published a short but rather brilliant discussion paper looking at ways in which patients and the public can be involved in lab-based research.
You can find the paper here (see link entitled ‘Involving people in laboratory-based research). It includes examples from the Alzheimer’s Society, Cancer Research UK and Parkinson’s UK, some really helpful guidelines to aide your thinking as well as links to further reading.
I highly recommend it.