Nothing about us, without us: is for us

Abstract

BackgroundPublic Participation Involvement Engagement (PPIE) is now strongly encouraged across health policy and research. Coproduction, although linked to PPIE is a way of working that can be applied to work collaboratively with participants in health. However, a lack of definition which leads to interchangeable terminology, limited guidance and examples of good practice on how to facilitate the process impedes progress. The Born in Bradford (BiB) research programme consists of a family of observational and longitudinal birth cohort studies (Raynor et al. in BMC Public Health 8:1–13, 2008; Dickerson et al. in BMC Public Health 16(1):1–14, 2016) which include participants from multi-ethnic and socially diverse backgrounds (Uphoff et al. in Int J Equity Health 12:1–12, 2013).MethodsThis paper aims to highlight our approach to PPIE and coproduction methodologies, to provide an outline of the methods we have utilised to work collaboratively with our cohort populations from diverse communities and how we have managed to overcome challenges to achieve successful PPIE.A secondary aim of this paper is to demonstrate the value of PPIE and coproduction and how it can enhance research.  Some examples from recent years are provided to demonstrate how useful the approach has been for BiB community engagement and community participation. In addition, we discuss the methods we have used and how this methodology has now been embedded into protocol and practice in our research.ResultsSuccessful and productive PPIE and coproduction occur where stakeholders are taken on board and realise the impact that their involvement can have in terms of policy design and delivery.ConclusionsThe involvement of participants and the community in research about them becomes more credible when equal partnerships are formed and they are involved in the whole process leading to community ownership of research. Hence, nothing about us, without us—is for us.