Developing the theoretical basis for service user/survivor-led research and equal involvement in research

Summary

Aims and methods— This article, written from a service user/survivor perspective, explores a hypothesis which seeks to offer a more systematic basis for the full and equal involvement of mental health service users/survivors in both the research process and research structures more generally. The hypothesis challenges traditional emphasis on positivist assumptions about the priority of values of ‘distance’, ‘neutrality’ and ‘objectivity’ (which it argues discriminate against service users and their experiential knowledge). It explores instead the idea that ‘the shorter the distance between direct experience and its interpretation, then the less likely resulting knowledge is to be inaccurate, unreliable and distorted. Results and conclusions— The proposal discusses ways in which such (objective and subjective) distance may be reduced, to improve the quality of research, to enable more equal involvement of service users and their direct experience and to make it possible for non-service user researchers to work alongside service users on more equal terms.

Declaration of Interest: Peter Beresford is Professor of Social Policy at Brunei University and Chair of Shaping Our Lives, the national independent user controlled organisation which receives its core funding from the UK Department of Health. No financial support from pharmaceutical or other commercial companies has been received by the author over the last two years. Funding has been gained from governmental and non-governmenatal funding agencies.