Gold standard involvement or co-production in research?

By Dr Karen Newbigging, Reader in Mental Health and Social Policy, NIHR School for Social Care Research, University of Birmingham (With thanks to Niyah Campbell, Youth Participation Lead, Institute for Mental Health for posing the challenge). 

It is fitting that the publication of our report on the contribution of the voluntary sector to mental health crisis care will coincide with Co-production Week. We set out to make lived experience of a mental health crisis the golden thread running through our approach to this study. We were greatly helped in the initial phases by Suresearch, who provided input on the design, advised on payment rates, and provided training for the whole team on interviewing. 

Co-production Week >>>

The core research team consisted of five academics, five co-researchers (i.e. people with lived experience) and a carer. The co-researchers were recruited via social media and our networks, including NSUN. From an overwhelming response, we were also able to recruit to a Reference Group, to act as a ‘critical friend’ to the study. This group, chaired by a Suresearch member, Dr Jo Barber, consisted of eight service users and was represented on the Study Steering Group. Dr Jacqui Dyer, who brought a breadth of lived experience and of approaches to inequalities, chaired the Study Steering Group, which involved three additional service users. 

The extent of the involvement of people with lived experience was evident at the two workshops when everyone came together to reflect on the emerging findings. The impact of people with lived experience on the study was evident and led to changes being made in the design of the research and our approach. Perhaps, the most impactful was the nature of the experience of a mental health crisis, which is often seen in very narrow terms as an urgent event. It became clear from those that had a personal experience of a mental health crisis that this was profoundly inadequate, and that our study needed to engage with how the crisis experience  unfolded over time. To this end, the Reference Group recommended undertaking repeat interviews with some of our service user participants. This was endorsed by the Study Steering Group and we were successful in securing further funding from NIHR for this purpose. 

Involvement in our study was evaluated positively by With-You an independent service user consultancy. Nonetheless, there were areas that needed improvement, particularly arrangements for payment and support. Whether this study was co-produced or was aiming for the highest standard in involvement, I will leave others to judge. Whatever the verdict, it is clear from our experience that there are implications for bodies that commission research, for Universities and for individual academics. 

If co-production is to be meaningfully realised in research, attention has to be paid to: the systems and processes for securing funding; recognising the contribution of people with lived experience not only through adequate payment and reimbursement but also proper systems of support and attention to personal development; and how individual academics are forging reciprocal relationships and learning from those with lived experience. All of this has to be underpinned by a thoughtful and thorough consideration of equality and diversity to ensure that research is up to the mark of co-production.