Evidence-based medicine (EBM) and clinical governance play a central role in raising the quality of medical care. People want clinical decisions to be based on the best evidence and EBM places scientific knowledge in the service of clinical decision-making. Yet a quite different agenda is engaging patients as partners in health research, to make the medical profession more accountable. Here, we examine the epistemological basis of EBM, and the ethical concerns raised by this. In particular, we examine the value of user-led research in psychiatry in improving the concept of ‘evidence’ in evidence-based psychiatry.

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Plain English summary Involving people in health research is increasingly recognised as being important to make sure that research is focused more on the needs of people who use health services. At present, ideas about what should be researched most often comes from researchers and/or health professionals like doctors and nurses rather than people with a lived experience of mental illness. In this study, we will talk with this group of people from across Wales to explore what they think research into their health services should focus on. The findings from this work will help to influence the work of the National Centre for Mental Health Research Partnership Group; as well as` researchers and health professionals and others who concentrate on mental health research. The Research group is a partnership between people with a lived experience of mental ill health and professionals with an interest in mental ill health. The group plan to take forward the ideas that came from this research and some of the ideas have already been used to increase funding in the area of mental health research. Abstract Background This paper is the result of continued collaboration between members of the Service User and Carer Research Partnership, based in Wales and supported by the National Centre for Mental Health, Health and Care Research Wales, and Hafal. The aim of this study was to explore the research priorities of people with experience of mental health services which include people with a lived experience of mental ill health, their carers, and professionals. Method A nominal group technique was used to gather data. A one-day workshop ‘Getting Involved in Research: Priority Setting’ was held to gather the ideas and suggestions for research priorities from people who have experience of mental health services. Results Twenty-five participants attended the workshop. 5 were mental health professionals, 20 had a lived experience of mental ill health, (of which 3 were also carers). 11 were male and 14 were female. 120 research ideas were generated across 6 ‘Ideas Generating Workstations’. Participants took part in a 3 stage vote to narrow down the ideas to 2 main research priorities. Conclusion The two main research priority areas that were identified: ‘Developing the knowledge of mental health issues amongst school-aged children’ as a vehicle to overcome stigma and discrimination, and to support young people to manage their own mental health. ‘Developing education as a tool for recovery’, for example by peer support. In addition, participants engaged in a notable discussion over the research priority: ‘How are carers supported during the recovery of the person for whom they care?’

This paper explores service users' experiences of a 'person-centred' mental health service. We describe the development of a model of social psychiatry that places the emphasis on the experiences of the person within social and political contexts. This establishes the foundations of a 'person-centred' approach, the values of which are described briefly. The results of interviews with 20 people are presented, in which their experiences of the service are explored in detail. These interviews reveal the struggle that lies at the heart of the professional-service user dialectic, which relates to issues of institutional power, roles and responsibility, and which places professional staff in conflict with the very notion of 'person-centredness'. No matter how 'person-centred' a mental health service may strive to be, there remain serious obstacles to the full realization of this approach. Despite this critique, there were many things that were valued by those who used the service. More detailed qualitative studies are required to explicate the complex relationships and paradoxes that emerged.