Making sure that research funded by the NIHR, charities and industry reflects the needs and priorities of patients, carers and the public is one of the most important agendas in public involvement.
It has been a focus for much activity over the years with the outstanding James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) being the most prominent and celebrated innovation in that time. These give patients and clinicians a voice in setting research priorities and you can get a fantastic overview of their work and much, much, more if you visit their excellent new website.
Locally, I am aware that there is also a lot more happening to involve people in setting research priorities. Last week I visited the East Midlands Collaboration for Leadership in Applied Health Research and Care (CLAHRC) and they have been doing a great deal to bring the public at this early stage in research design.
The % of research questions submitted to the NIHR by patients and carers
However, it is important that we have other, perhaps more informal routes, to people to use if they want to put forward a research idea. I am not too sure what charities and industry are doing but, over the summer, the NIHR has reviewed and revamped its ‘drop-box’ where anyone can submit a research question or idea. You can find it here. The NIHR are also supporting this with a campaign so that more people know about this route.
I think the next challenge for JLA but also this ‘drop-box’ route – for the NIHR and those who work with it – is to demonstrate how such ideas and questions have been turned into research. Not all can be for all sorts of reasons. Nor is it a democratic vote or the research equivalent of ‘The Voice’ where the loudest voice wins. But credibility will depend on the degree to which these tools are producing a much more balanced portfolio of research which reflects both patient needs and scientific priorities.
You may be interested to know that the NIHR has asked me to look further into the issue of how to involve the public in identifying research topics. So, any thoughts or comments you have on this would be most welcome.
Simon Denegri's Lay Review 