Since 2014, I have been involved with the PARTNERS2 research programme. This is a multi-site study which aims to develop better ways of supporting people with diagnoses of schizophrenia, bipolar or other psychoses through the development and delivery of a new collaborative care intervention, based within GP practices. Public and Patient Involvement, or PPI as it is often shortened to, is embedded throughout the programme. As a service user with a diagnosis of bipolar, I joined the Lived Experience Advisory Panel (LEAP) at the Birmingham site before moving on to the position ofService User Research Assistant. This has given me two distinct perspectives.
"When I became staff, I became much closer to the day-to-day decision making and, in theory, have more ‘power’ to shape and direct the project"
Fluctuations in power dynamics within a research hierarchy consisting of academics, clinicians and people with lived experience have been and remain a challenging yet fascinating aspect to my role. Personal lived experience was central to being accepted as a LEAP member and, from the outset, I was open and honest about my identity as a service user. Despite the stigma that still surrounds experience of mental health issues, over many years I had gradually worked through any internalised feelings of low self-worth that can surround the sense of identity of a ‘mental health service user’. Nevertheless, it was a daunting prospect to begin working alongside clinicians from a treatment system that has inherent power imbalances embedded within its practice. The very language employed by both clinicians and academics, with its copious use of acronyms and jargons, seemed to serve as a signifier of exclusivity.
As a LEAP member, it became clear to me that my input would be advisory and the LEAP as a whole would have limits to its scope and influence. I was consulted on various aspects of the study at quarterly meetings and my input, along with that of the other LEAP members, was valued and respected, even if in the end it was not always adopted. I still felt part of the wider process, for example, contributing to a glossary that demystified and made accessible the language that seemed so alienating in my first few meetings. Overall, LEAP members were able to co-produce aspects of the study and fed into decisions that were taken elsewhere within the team.
A different hierarchy
When I became a staff member based at the University of Birmingham with the title of Service User Researcher, my lived-experience identity remained explicit. I became much closer to the day-to-day decision making and, in theory, have more ‘power’ to shape and direct the project. However, I am now alsomuch more aware of a different hierarchy of influence at play: a research assistant, whether with lived experience or not, sits quite low down the pecking order within an academic institution! Some of my colleagues have avoided the Service User Research Assistant title, finding it reductive and potentially focusing too much attention on lived experience to the detriment of other skills they may possess as academic researchers. I feel happy to use it: I carry out the tasks of an academic researcher as well as drawing on my personal experiences to contribute to many aspects of the study.
Overall, the practicalities of my role have made me far more aware of the need for compromise and pragmatism in such a complex study programme. Inevitably, this can lead to feelings of disempowerment and disappointment. To mitigate these, we need to be open about the limits to co-production and power-sharing within academic institutions and their structures.