1st June 2015 Blog

Reflections from 10 years of service user and survivor research event

Lived experience • Research methods •

On Monday (1st June, 2015), St George’s University of London celebrated 10 years of doing service user and survivor research with a fantastic day of discussions attended by many inspirational leaders in mental health research, from a lived experience perspective. Three of us from the McPin Foundation attended.

In one of the sessions, Sarah Carr, Peter Beresford, Diana Rose and Jayasaree Kalathil reflected on the place of collaborative and survivor research in universities.

Is it safe in universities? Do they provide nurturing environments to support the wellbeing of staff? Do they value the knowledge(s) brought by different people in a research team including the expertise of people with lived experience of mental health problems?

The discussion around this topic was challenging and thought provoking. The speakers identified threats to service user and survivor research anywhere (university, voluntary sector, independent consultants) from those who devalue our methods and the importance of knowledge that comes from living an experience.

The pressures within universities – to publish peer review journal articles and bring in money – may be barriers to doing good, values-based service user and survivor research.

One solution offered was to challenge the politics behind research funding and the use of research evidence in practice, including joining up through a democratic international health movement. There were also calls to look beyond psychiatry for allies and colleagues, for instance in mad studies, queer studies, feminism, geography, politics, history and sociology.

An important gap in many research projects is diversity in the make up of research teams, including among service user or survivor researchers. Diversity is crucial to make sure that the focus of research is relevant for people from BME communities, other minority groups and for everyone.

Has service user and survivor research continued to be ‘exclusive’ by not paying sufficient attention to diversity? Has it become too much part of an orthodox culture or can it challenge the status quo and push forward with impactful research that changes lives?

As one of the audience reminded everyone, research has to have a purpose and findings must be used to improve people’s experiences.

Despite all the challenges, the progress over 10 years of university-based research was acknowledged. These institutions are important within the research landscape.

As the day highlighted, we must not lose sense of the distance travelled as we look to the future and bring allies and supporters with us. We need a thriving university-based mental health research community that embraces expertise by experience within its project teams.

The McPin Foundation is really pleased to be just starting a project evaluating peer support with the talented and expert team at St George’s University of London.

We are also pleased to be part of this impressive wider community of people committed to the importance of lived experience in research and to think about where this important work can take us over the next 10 years.