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The Ethics of Survivor Research: Guidelines for the Ethical Conduct of Research Carried Out by Mental Service Users and Survivors Alison Faulkner, Bristol: Policy Press, 2004, £9.95, 56 pp. ISBN: 1-86134-641-7

Published online by Cambridge University Press:  02 January 2018

Angela Sweeney*
Affiliation:
Service User Research Enterprise (SURE), Institute of Psychiatry, London SE5 8AF
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Abstract

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Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution (CC-BY) license (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
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Copyright © Royal College of Psychiatrists, 2005

User involvement in and control of research has increased dramatically from the early days of user-focused monitoring (Reference RoseRose, 2001) and strategies for living (Reference Faulkner and LayzellFaulkner & Layzell, 2000). This owes something to research funders who increasingly give user involvement as a pre-requisite of a successful bid (Reference BeresfordBeresford, 2005). Therefore this report by Alison Faulkner is both timely and essential reading.

It is intended for user/survivor researchers, those wishing to involve users in research and those wishing to commission research that follows good practice in user involvement. The report is accessible, well laid out and is easy to follow, with useful summaries and pointers for further information en route. In the final pages useful advice is provided on further reading and contacts.

Each chapter provides succinct information on the topic under consideration. Of particular importance is an early chapter that describes the principles underlying user research. These principles require that research should be clear and transparent, should aim to empower participants and have at its heart a commitment to change. The roles of accountability and identity are critically discussed and the reader is left with a clearer picture of the meaning of user research as well as its ethical conduct. Later chapters review in more detail what this means at specific points of the research process, from planning and design, training and support through to dissemination and implementation. The final chapter considers the often tricky business of dealing with research ethics committees who may be unfamiliar with, or unsympathetic to, the goals of user research. In writing this report, Faulkner has provided an excellent, succinct yet comprehensive account of the ethical conduct of research undertaken by users.

Faulkner’s biggest achievement has been in providing a definition of what it means to be a user or survivor exploring the social world. Although the guide is not intended as a rulebook, it is, in some senses, a manifesto to be interpreted as the particular project suggests. Moreover, it is one that the majority of survivor researchers, including myself, may have already signed up to - the guidelines having been written following consultation with user researchers. This strengthens the sense of cohesiveness among user researchers. It also gives further credence to the status of user research as an independent, valid and reliable form of research in its own right. However, it is doubtful whether the more sceptical of mainstream researchers will be convinced; survivor research has a long way to go before equal status is achieved.

In summary, this is not a guide for beginners wishing to embark on a research project, although it will be invaluable for this and other targeted audiences. Instead it is an excellent description of the values and principles that make user research what it is. I would highly recommend this report to anyone who conducts, commissions, or is affected by research.

Footnotes

Alison Faulkner Bristol: Policy Press, 2004, £9.95, 56 pp. ISBN: 1-86134-641-7

References

Beresford, P. (2005) Developing the theoretical basis for service user/survivor-led research and equal involvement in research. Epidemiologia e Psichiatria Sociale, 14, 49.CrossRefGoogle ScholarPubMed
Faulkner, A. & Layzell, S. (2000) Strategies for Living: A Report of User-Led Research into People's Strategies for Living with Mental Distress. London: Mental Health Foundation.Google Scholar
Rose, D. (2001) Users' Voices. London: Sainsbury Centre for Mental Health.Google Scholar
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