Re: The BMJ’s own patient journey
We are delighted to see The BMJ taking the lead in promoting meaningful public and patient partnership in research through its new strategy1. We also support Vayena’s2 contention that the role of patients and the public in initiating and conducting health research is an important and often underplayed aspect of the “patient revolution” that The BMJ is seeking to advance. Involving patients throughout the research process in a major organisation may seem unrealistic but over the past five years the NIHR Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula (a collaboration involving Exeter and Plymouth Universities and 13 NHS organisations, see http://clahrc-peninsula.nihr.ac.uk) has developed a model of patient and public involvement (PPI) in research, perhaps unique within the UK, which aims to do just this.
Working closely with researchers, clinicians and our “in house” Public Involvement Group (PenPIG), our model of PPI in research enables members of the public, including “seldom heard groups” such as people with dementia, to collaborate with researchers and clinicians in a number of ways: as generators of research questions, as co-applicants on grants, as advisors and developers of research methods, as members of trial management and steering groups, and as contributors to data analysis and written and oral dissemination. We have also demonstrated that PPI can be incorporated into research areas that typically have not involved the public, such as computer modelling and simulation of health systems in everyday operation3. PenPIG influence is embedded at an organisational level too, with an equal vote in the Stakeholder Group which prioritises PenCLAHRC research projects and representation on the Management Board. We also aim to evaluate the impact of our PPI activities (see http://piiaf.org.uk).
The NIHR is currently working on a strategic review of PPI in its research the full results of which are due to be presented at the INVOLVE conference in November 2014 (see www.invo.org.uk). As part of this review we asked PenPIG what they would see as the priorities for improving and extending PPI in health research. They identified two priorities that fit with The BMJ initiative:
1. Building public awareness of research and opportunities for involvement through increasing education about research and PPI for school students, medical students and researchers.
2. Increasing PPI in setting the research agenda and ensuring public involvement in the governance of research at national and regional levels.
It is clear from our experience that patients and members of the public can and should be involved in health research as both producers and users of research knowledge; in doing so they may help reduce research wastage4. The changes that The BMJ are making to increase public and patient partnership in their work, other initiatives around the country such as the James Lind Alliance, along with our work, are all showing what can be achieved; but they also demonstrate the fundamental importance of appropriate long term funding and sustained organisational commitment if the potential benefits of patient and public involvement are to be fully realised.
1. Richards T and Godlee F BMJ 2014;348:g3726
2. Vayera E. BMJ 2014;349:g4318
3. Pearson M, Monks T, Gibson A, Allen M, Komashieb A, Fordyce A, Harris-Golesworthy F, Pitt M, Brailsford S and Stein K. Involving patients and the public in healthcare Operational Research - the challenges and opportunities. Operations Research for Healthcare Operations Research for Health Care 2013;2:86-9
4. Chalmers I and Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet 2009;374(9683):86-9
Competing interests: No competing interests