The lived experience of co-producing research

By Sarah Gibson

The Peer Worker Research Project – New Ways of Working in Mental Health Services[1] – looked at what supports and hinders peer worker roles being introduced into mental health services and how international research evidence applies to service contexts in England. Peer workers were defined as ‘people with lived experience of mental health problems who are employed, in a paid or unpaid capacity, to explicitly use those experiences to support others using mental health services’.

We used a co-production approach to research. This values the lived experience of service user researchers, peer-led service leaders and peer workers alongside clinical and academic expertise in research. This was vital since the focus of our research was people using lived experience in delivering mental health services. We conducted and compared ten different case studies of services where peer worker roles had been introduced. In each case study we interviewed service users, peer workers, their colleagues, managers and strategic managers/ commissioners.

The PEER Group – a group of local mental health service users and carers who work alongside researchers at St George’s – were part of shaping the research questions, aims and the evidence framework that the research tested. Two members of the PEER Group were then formally recruited to the project steering group.  

Two service user researchers, Sarah Gibson and Katherine Owen, undertook the day-to-day work of the study engaging with case study sites, designing interview schedules, collecting and analysing interview data and writing up and presenting our final report and findings. All this was done alongside the lead researcher, Steve Gillard, with reference to the wider research team and steering group. This enabled multiple perspectives to be sought and interwoven into our work. 

Support for the service user researchers’ roles included their own peer-to-peer support, good line management and supervision from Steve and external mentoring from a more experienced service user researcher. Sarah and Katherine then supported the PEER Group members on the steering group, through pre-briefing and debriefing, enabling their contributions to be heard.

Co-production was also included in the analysis. The service user researchers developed themes from the research participants’ interviews. These were discussed with the multi-perspective research team, refined and then used to analyse all the interviews. Early findings were then fed back for discussion with research participants and stakeholders representing all the roles included in the study at workshop events. This enabled researchers to identify gaps and understand priorities for applying these findings to practice.

Finally, the study findings were shared with people interested in developing peer worker roles in NHS and voluntary sector mental health services at an end of study conference with speakers including NHS strategic managers, peer workers, mental health nursing and voluntary sector peer-led service leads alongside the researchers.

The way co-production worked to produce new knowledge in our study is the topic of an independent study currently being undertaken by Kati Turner. However the impacts for us were obvious. The place of people working from lived experience alongside voluntary sector and NHS service leads, academics and clinicians in our team mirrored the culture that the services we were researching were aiming to achieve. This helped people to engage with our research.

Interviewees spoke to us from the heart, recognising our understanding of the topic, as we worked from our own lived experience. We were well equipped and supported to deal with complex issues like negotiating roles, boundaries, confidentiality and the costs of and blessings of working from lived experience in mental health. Our experience as service user researchers was also useful in supporting other service users involved in the PEER Group, research team, steering group and as participants in interviews, the feedback workshops and conference.     

Co-producing this research about services where people work from multiple perspectives made us aware of the risks of imposing any single research perspective on the people we interviewed. As we honoured multiple perspectives in our research team this led naturally to multiple perspectives being honoured in the research settings and findings. This should give our findings greater relevance to the real life contexts of introducing peer worker roles into mental health services.

www.peerworker.sgul.ac.uk

Contact: Sarah Gibson
Email: sgibson@sgul.ac.uk