Exploring patient and public involvement (PPI) and co-production approaches in mental health research: learning from the PARTNERS2 research programme

Abstract

Background Patient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the importance of power-sharing to promote inclusive research practices, valuing and respecting knowledge from different sources, and relationship building. Applying co-production principles in research trials can be difficult, and there are few detailed worked examples or toolkits. This paper explores the successes and challenges encountered by one research team. Methods Our paper is written by a team of 21 people working on PARTNERS2, led by a smaller co-ordinating group. Using a co-operative style inquiry, the authors have reflected on and written about their experiences; analysis of the resulting 15 accounts provided examples of how PPI and co-production were delivered in practice. Results We reveal varied and complicated experiences as we developed our collaborative approach across the entire research programme. Four main themes emerge from reflective accounts which describe aspects of this process: (1) recognising the importance of ‘emotional work’; (2) developing safe spaces to create and share knowledge; (3) some challenges of using our personal identities in research work; and (4) acknowledging power-sharing within the research hierarchy. We also found continual relationship building, how different forms of expertise were valued, and stigma were central to shaping what work was possible together. Other important practices were transparency, particularly over decision making, and clear communication. Conclusions Our work provides one example of the ‘messy’ nature of collaborative research in practice. The learning we surface was contextual, generated within a large-scale research programme, but applicable to other studies. We found for success there needs to be an acknowledgement of the importance of emotional work, creating safe spaces to co-produce, transparency in decision making and reflection on the difficulties of using personal identities in research work including for service user researchers. These elements are more important than existing guidelines suggest. Implementation of actions to support emotional work, will require changes within individual teams as well as institutions. Introducing reflective practice in teams may be helpful in identifying further improvements to inclusive research practice.

Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

“…Published studies have similarly reported on the richness that emerges in the research and partnership from adopting PPIE in co-design [ 32 , 33 ]. Our work resonates with the reciprocal learning reported emphasising the importance of building the foundations for relationships, fostering trust, respect, creating a safe space, to talk about the research and the effects on the partnership [ 74 ].…”

Defining research priorities for youth public mental health: reflections on a coproduction approach to transdisciplinary working

“…By involving a range of stakeholders, including young people themselves, in defining the research priorities presented here, we hope that research based within these priority areas will have a positive impact on young people’s lives and improve their mental health. There is evidence that coproduction has positive outcomes [ 10 ], but few studies have explored how coproduction is achieved in research practice [ 12 ]. We therefore recommend that further work is undertaken to monitor and evaluate the impact of coproduction on both the research process and the research findings or outputs.…”

“…In recent years, coproduction has become a popular approach in development work with young people and, most recently, in health research [ 11 ]. Within mental health research specifically, coproduction is a relatively new and innovative approach, with evidence of positive involvement and outcomes including improved mental well-being for people involved in the process [ 10 , 12 ]. The New Economics Foundation has developed six principles of coproduction that are widely used as a framework to understand coproduction [ 10 ]: Taking an assets-based approach: transforming the perception of people, so that they are seen not as passive recipients of services and burdens on the system, but as equal partners in designing and delivering services.…”

Evaluation of a primary care-based collaborative care model (PARTNERS2) for people with diagnoses of schizophrenia, bipolar, or other psychoses: study protocol for a cluster randomised controlled trial

“…The role of the LEAPs and service user researchers in the PARTNERS2 programme is the subject of a separate article. 11 …”