What should we make of the latest figures from INVOLVE and the Health Research Authority (HRA) showing which funders are best at public involvement in research?
In a re-run of an joint-exercise first done in 2010, INVOLVE and the HRA looked at the public involvement component of over 1100 research applications that went before research ethics committees in 2012.
For non-commercially funded research (the National Institute for Health Research (NIHR), medical research charities, Government research councils) they found that 40% of researchers reported involving or intending to involve the public and that this could be validated on closer inspection. This is up from 29% in 2012. A further 40% did not understand public involvement based on the information presented and 20% had no plans whatsoever.
For commercially funded research, however, the headline figure for researchers reporting public involvement dips to 5% (it was 2% in 2010) and, worse still, 75% said they had no plans for public involvement compared to 67% in 2010. This suggests that, overall, things have got worse rather than better in the pharma sector. Nonetheless I am not prepared to write them off as a lost cause just yet – I’ve just been reading quite a good paper by the ABPI and Vermilion Life Sciences about involving patients in re engineering medicines development ahead of a round table vent tomorrow. And here. Both suggest that industry may be understanding the need to look beyond participation in trials as the ‘be all and end all’ of research.
Break down the figures for non-commercial research a bit further and we find a general picture of improvement. 78% of NIHR applications had public involvement compared to 67% in 2010. Medical charities improved from 37% to 47%, Universities went up to 31% from 24% and the Research Councils up to 28% from 14%. The fact that universities show the smallest rise is strange given the emphasis on ‘impact’ in the Research Excellence Framework (REF). But then universities do seem to be a bit preoccupied with improving public understanding of research as opposed to involving them in decision-making. And I still think charities should be competing with NIHR for the top slot.
The report makes a number of wise recommendations for improving the situation. These suggest that research ethics committees could be more searching in their enquiries around public involvement as part of their overall approach to ensuring research is ethical. Also that funders might wish to ponder the degree to which their research really is meeting patient and public priorities if they can not demonstrate their active involvement. There’s also clearly a significant task to be tackled in education and training researchers in public involvement as part of their career development.
But – and this is purely a personal view – you do wonder whether any research team should be allowed to present something to an ethics committee unless they can demonstrate public involvement or similar evidence of due consideration being given to public views? After all, they are using a publicly funded system for enabling them to get the work done, so perhaps there should be a quid pro quo.
I will leave you to debate who emerge as the good, the bad and the ugly funders in this particular exercise! Funnily enough, I happen to be speaking at something called the Clinical Innovation Congress next week as part of a session called ‘The good, the bad and the ugly in clinical trials’
The full report can be found here.