This post was co-produced with user/survivor researchers Sarah Carr and Tina Coldham
With the advent of co-production, a way of approaching action in social care which accords equal recognition to the assets and expertise of all those involved, are we entering an era of post-participation?
We (Sarah, Tina and Martin) are involved in a research group involving mental health service user and survivor researchers and non-user peers. We are exploring a way to co-produce a research bid which evaluates the effectiveness and cost-effectiveness of personalisation in mental health. Given the nature of the topic it would be almost hypocritical to undertake the task in any other way. Personalisation isn’t about telling people who use mental health services what to do; it’s about all parties working together for mutually agreed outcomes. So, we’re co-producing a bid to fund co-produced research. We’re making good progress, but it isn’t always easy and we have to be reflective about the dynamics of power and influence as we go along.
To some, participation in research means the tokenistic inclusion of a service user (just the one!) on a project advisory group or as the person to whom all things ‘userish’ are delegated, sometimes even the identification of research ‘subjects’. However, service user/survivor researchers can be part of the research team, which can have both its risks and rewards. In most cases non-user academics expect participation on their terms, to support their investigations without involving users in defining the question. In our work, though, we are striving to go beyond this and challenge this understanding of participation.
We are exploring how co-production can work in research from the very start of the process (writing the initial bid) through to co-authoring the final report and disseminating findings. To guide our work we’re using the Purpose, Presence, Process and Impact (PPPI) framework. These guiding principles for participation are being developed by the National Involvement Partnership, a co-ordinator of which is contributing to developing the research bid.
We have created a Lived Experience Advisory Panel (LEAP) of mental health service user and survivor researchers as an integral part of the project team. LEAP members meet separately and together with the full project team. LEAP members are developing proposals for their own work programme, leading on one of the proposed studies within it and co-producing or advising on others.
LEAP members are researchers, trainers and consultants in mental health and social care. Some bring considerable academic, methodological and policy implementation expertise. All have lived experience of mental distress and/or service use. The rationale for their contribution is that they are regarded as peers who are equal but different. It is their diverse perspectives and experiential knowledge that add value and depth to an applied research programme focusing on practice and outcomes. The LEAP co-chairs coordinate activity and support members. One of the members talks with people who are using direct payments and personal budgets in his local area to make sure the questions we are asking are relevant – we describe his task as ‘keeping it real’.
So far the majority of the challenges have been practical ones. Currently, the form to claim payments for this work is not accessible to researchers who do not work in a conventional academic context. Many user researchers work on the margins of universities, often freelance or for community or voluntary organisations, so their profile and CVs look different, making it difficult to complete research grant application forms. Engagement with academic institutions and research funders can be challenging. However, we have spent time discussing how improvements can be made to make processes more accessible and to find ways to allow user/survivor researchers to demonstrate their experience and expertise.
Deriving costs for the time which LEAP members will spend on the proposed research programme has also hit similar difficulties. University researchers have access to administrative support to work out their costs, but user/survivor researchers don’t generally have access to these support resources. So, the three of us have had to spend extra time addressing administrative access issues when we could have been developing the proposal itself. For some of us, at times, that has felt a bit too much like navigating the mental health system!
Any new initiative is potentially fraught with difficulties, particularly when user/survivor and non-user university researchers are working together in the context of implicit power imbalances. However, the three of us are able to be open with one another about problems as they arise so that we can address them before they harm our working relationship. Co-production is not always easy, but if it is then it is possible that we are not doing it properly!