Abstract
In the light of the declaration “Nothing about us without us” (Charlton, 2000), interest in co-production, and coproduced research is expanding. Good work has been done establishing principles for co-production (Hickey et al., 2018) and for good quality involvement (Involve, 2013; 4Pi, 2015) and describing how this works in practice in mental health research (Gillard et al., 2012a,b, 2013). In the published literature, co-production has worked well in qualitative research projects in which there is often methodological flexibility. However, to change treatment guidelines in the UK, e.g., the National Institute for Health and Care Excellence guidelines, and influence service commissioning, high quality quantitative research is also needed. This type of research is characterized by formal methodological rules, which pose challenges for the scope of co-production. In this paper we describe the significant challenges and solutions we adopted to design and deliver a coproduced randomized controlled trial of mental health peer support. Given the methodological rigidity of a randomized controlled trial, establishing clearly which methodological and practical decisions and processes can be coproduced, by whom, and how, has been vital to our ongoing co-production as the project has progressed and the team has expanded. Creating and maintaining space for the supported dialogue, reflection, and culture that co-production requires has been vital. This paper aims to make our learning accessible to a wide audience of people developing co-production of knowledge in this field.
Highlights
We discuss co-production in quantitative research, how it can work in practice, and the barriers and enablers of co-production
We illustrate the decision-making process by citing directly from minutes of the different meetings that collectively, manage the trial. These include: the Trial Management Group (TMG—a subgroup of people involved in managing the trial who meet on a monthly basis including Chief Investigator, Senior Trial Statistician, Trial Manager, one of the two experienced service user researchers, Health Economist, the academic psychiatrist plus a data management and a quality assurance advisor); the Lived Experience Advisory Panel (LEAP—a group of people independent from the trial who have personal experience of peer support, using mental health services and working as service user researchers who meet biannually to advise on conduct of the trial from a lived experience perspective); and investigator meetings
The chief investigator leading the meeting used a graphic to launch the discussion in which the central zone refers to the ideal targeting of the intervention as an intersection of (1) people most likely to benefit, (2) existing evidence about what is most likely to work best, (3) what is known about how peer support works
Summary
We discuss co-production in quantitative research (with a specific focus on randomized controlled trials), how it can work in practice, and the barriers and enablers of co-production. Using standpoint epistemologies familiar to feminism (Harding, 1991) and other critical disciplines, the active involvement of people who have made use of healthcare services as researchers, brings a service user knowledge (Beresford, 2013), or experiential knowledge (Rose, 2017), critiquing and challenging dominant and universalizing ways of knowing about health, with a primary objective of democratizing research (Pinfold et al, 2015) This experientially grounded, or tacit knowledge, acquired through private and personal ways of knowing the mind and body, differs from a more codified or theoretical knowledge acquired through study and training (Mol and Law, 2004), and offers a competing. Different interpretations of data within the research team owned and understood in terms of how who we are has shaped the knowledge we have produced
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