Developing the theoretical basis for service user/survivor-led research and equal involvement in research
Abstract
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.
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The quest to find a person (or a group) with characteristics as close as possible to a target study population was particularly challenging for research teams in public health studies, where the target population would not necessarily see themselves as having a health condition or need.
“The quest to find a person (or a group) with characteristics as close as possible to a target study population 173 was particularly challenging for research teams in public health studies, where the target population would not necessarily see themselves as having a health condition or need.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [173]
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“The RAPPORT study sample was limited to six topic areas; while these were purposively selected to provide a broad range in terms of designs, settings and target participant populations, we acknowledge that this does not include areas where, for example, there is a growing body of user-led research, such as in mental h…”
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Self-citationConsumer involvement in health research: a <scp>UK</scp> scoping and survey
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- Authors
- Beresford, P.
- Affiliations
- Brunel University of London (GB)
- Corresponding author
- Beresford, Peter
- ORCID
- Beresford, Peter
- Venue
- Epidemiologia e Psichiatria Sociale
- Publisher
- Cambridge University Press (CUP)
- Published
- 2005-03
- Volume
- 14
- Issue
- 1
- Pages
- 4-9
- ISSN
- 1121-189X (ISSN-L)
- 2038-1816
- OpenAlex
- W2143588467
- Cited by
- 145
- References
- 20
- Citations by year
- 2026: 5 · 2025: 10 · 2024: 4 · 2023: 10 · 2022: 4 · 2021: 11 · 2020: 8 · 2019: 17 · 2018: 9 · 2017: 6 · 2016: 6 · 2015: 5 · 2014: 10 · 2013: 5 · 2012: 9
- FWCI
- 7.72
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Epidemiologia e Psichiatria Sociale (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Sociology and Political Science › Qualitative Research Methods and Ethics
- Social Sciences › Sociology and Political Science › Participatory Visual Research Methods
- Keywords
- mental health service users, experiential knowledge, objectivity and neutrality, co-research, research quality
- MeSH terms
- Workforce, Attitude to Health, Community Participation, United Kingdom, Health Services Research, Humans, Life Change Events, Mental Health Services, Psychological Theory, Survivors
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