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Published in: BMC Psychiatry 1/2024

Open Access 01-12-2024 | Research

PPI in psychiatry and the problem of knowledge

Authors: Diana Rose, Peter Beresford

Published in: BMC Psychiatry | Issue 1/2024

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Abstract

This article begins by locating Patient and Public involvement ((PPI) historically and argues that ‘mental health’ was a special case. This movement held promise for service users in repositioning them as researchers as opposed to ‘subjects’. We argue, however, that ultimately it failed and was reduced to involved publics ‘tinkering at the edges’. In respect to this we reference institutions, hierarchies, organisations and the overall political climate. Ultimately, however, it failed at the level of knowledge itself in that t he underlying assumptions of conventional researchers, their aims and goals, clashed with those of the assumptions and aims of survivors. However, we argue that all is not lost, the mainstream itself is imploding and beneath the surface forms of distinctly survivor-led knowledge are emerging.
Literature
1.
go back to reference CHMC and GPMH, Treated Well?....... 1988, London: GPMH. CHMC and GPMH, Treated Well?....... 1988, London: GPMH.
2.
go back to reference Croft S, Beresford P. Whose empowerment? Equalizing the competing discourses in community care. In: Empowerment in community care. Springer; 1995. p. 59–73.CrossRef Croft S, Beresford P. Whose empowerment? Equalizing the competing discourses in community care. In: Empowerment in community care. Springer; 1995. p. 59–73.CrossRef
3.
go back to reference Van Teijlingen ER, et al. Midwifery and the medicalization of childbirth: comparative perspectives. Nova Publishers; 2004. Van Teijlingen ER, et al. Midwifery and the medicalization of childbirth: comparative perspectives. Nova Publishers; 2004.
4.
go back to reference Harding SG. Feminism and methodology: social science issues. Indiana University Press; 1987. Harding SG. Feminism and methodology: social science issues. Indiana University Press; 1987.
5.
go back to reference Harding S. Rethinking standpoint epistemology: What is" strong objectivity?". The Centennial Review. 1992;36(3):437–70. Harding S. Rethinking standpoint epistemology: What is" strong objectivity?". The Centennial Review. 1992;36(3):437–70.
6.
go back to reference Harding S. Sciences from below: Feminisms, postcolonialities, and modernities. Duke University Press; 2008. Harding S. Sciences from below: Feminisms, postcolonialities, and modernities. Duke University Press; 2008.
7.
go back to reference Harding S. "Strong objectivity" and socially situated knowledge, in Whose science? Whose knowledge?, H. S., Editor. Cornell University Press: New York; 1991. p. 138–163. Harding S. "Strong objectivity" and socially situated knowledge, in Whose science? Whose knowledge?, H. S., Editor. Cornell University Press: New York; 1991. p. 138–163.
8.
go back to reference Voronka J. The politics of “people with lived experience” Experiential authority and the risks of strategic essentialism. Philos Psychiatry Psychol. 2016;23(3):189–201.CrossRef Voronka J. The politics of “people with lived experience” Experiential authority and the risks of strategic essentialism. Philos Psychiatry Psychol. 2016;23(3):189–201.CrossRef
9.
go back to reference Haraway D. Situated knowledges: the science question in feminism and the privilege of partial perspective. Fem Stud. 1988;14(3):575–99.CrossRef Haraway D. Situated knowledges: the science question in feminism and the privilege of partial perspective. Fem Stud. 1988;14(3):575–99.CrossRef
10.
go back to reference Hall S. The local and the global: Globalization and ethnicity. Cult Politics. 1997;11:173–87. Hall S. The local and the global: Globalization and ethnicity. Cult Politics. 1997;11:173–87.
11.
go back to reference UPIAS, The Fundamental Principles of Disability. UPIAS; 1976. UPIAS, The Fundamental Principles of Disability. UPIAS; 1976.
12.
go back to reference Hunt P.A.C.C. 'A critical condition' in Stigma: the experience of disability, P. HUnt, Editor, Geoffrey Chapman: London; 1966. Hunt P.A.C.C. 'A critical condition' in Stigma: the experience of disability, P. HUnt, Editor, Geoffrey Chapman: London; 1966.
13.
go back to reference Oliver M. If I had a hammer: the social model in action. Disabling barriers–Enabling environments, 2004. 2: p. 7–12. Oliver M. If I had a hammer: the social model in action. Disabling barriers–Enabling environments, 2004. 2: p. 7–12.
14.
go back to reference Oliver M. The social model of disability: thirty years on. Disabil Soc. 2013;28(7):1024–6.CrossRef Oliver M. The social model of disability: thirty years on. Disabil Soc. 2013;28(7):1024–6.CrossRef
15.
go back to reference Rose DS. Mad knowledges and user-led research. Springer Nature; 2022. Rose DS. Mad knowledges and user-led research. Springer Nature; 2022.
16.
go back to reference Gomory T, Cohen D, Kirk SA. Coercion: The only constant in psychiatric practice? In: Krankheitskonstruktionen und Krankheitstreiberei. Springer; 2013. p. 289–312.CrossRef Gomory T, Cohen D, Kirk SA. Coercion: The only constant in psychiatric practice? In: Krankheitskonstruktionen und Krankheitstreiberei. Springer; 2013. p. 289–312.CrossRef
17.
go back to reference Fricker M. Epistemic injustice: power and the ethics of knowing. Oxford: Oxford University Press; 2007.CrossRef Fricker M. Epistemic injustice: power and the ethics of knowing. Oxford: Oxford University Press; 2007.CrossRef
18.
go back to reference Morgan D. Paradigms lost and pragmatism regained methodological implications of combining qualitative and quantitative methods. J Mixed Methods Res. 2007;1(1):48–76.CrossRef Morgan D. Paradigms lost and pragmatism regained methodological implications of combining qualitative and quantitative methods. J Mixed Methods Res. 2007;1(1):48–76.CrossRef
19.
go back to reference Evans D. Hierarchy of evidence: a framework for ranking evidence evaluating healthcare interventions. J Clin Nurs. 2003;12(1):77–84.CrossRefPubMed Evans D. Hierarchy of evidence: a framework for ranking evidence evaluating healthcare interventions. J Clin Nurs. 2003;12(1):77–84.CrossRefPubMed
20.
go back to reference Brett J, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. J Health Expect. 2014;17(5):637–50.CrossRef Brett J, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. J Health Expect. 2014;17(5):637–50.CrossRef
22.
go back to reference Llewellyn-Beardsley J. et al., Characteristics of mental health recovery narratives: Systematic review and narrative synthesis. PLoS One. 2019. Llewellyn-Beardsley J. et al., Characteristics of mental health recovery narratives: Systematic review and narrative synthesis. PLoS One. 2019.
23.
go back to reference Costa L, et al. “ Recovering our stories”: a small act of resistance. Stud Soc Justice. 2012;6(1):85.CrossRef Costa L, et al. “ Recovering our stories”: a small act of resistance. Stud Soc Justice. 2012;6(1):85.CrossRef
24.
go back to reference Aldred R. From community participation to organizational therapy? World Cafe and Appreciative Inquiry as research methods. Commun Dev J. 2011;46(1):57–71.CrossRef Aldred R. From community participation to organizational therapy? World Cafe and Appreciative Inquiry as research methods. Commun Dev J. 2011;46(1):57–71.CrossRef
25.
go back to reference Sayce L. From psychiatric patient to citizen: Overcoming discrimination and social exclusion. Macmillan International Higher Education; 1999. Sayce L. From psychiatric patient to citizen: Overcoming discrimination and social exclusion. Macmillan International Higher Education; 1999.
26.
go back to reference Gooding P. A New era for mental health law and policy : supported decision-making and the un Convention on the rights of rersons with disabilities. Cambridge: Cambridge University Press; 2017. 282. Gooding P. A New era for mental health law and policy : supported decision-making and the un Convention on the rights of rersons with disabilities. Cambridge: Cambridge University Press; 2017. 282.
27.
go back to reference Wallcraft J, Bryant M. The mental health service user movement in England, policy report 2, London, The Sainsbury Centre for Mental Health., The Mental Health Service User Movement in England, Policy report 2, in Policy Reports. The Sainsbury Centre for Mental Health: London; 2002. Wallcraft J, Bryant M. The mental health service user movement in England, policy report 2, London, The Sainsbury Centre for Mental Health., The Mental Health Service User Movement in England, Policy report 2, in Policy Reports. The Sainsbury Centre for Mental Health: London; 2002.
28.
go back to reference Winkler F. Consumerism in health care: beyond the supermarket model. Policy Polit. 1987;15(1):1–8.CrossRef Winkler F. Consumerism in health care: beyond the supermarket model. Policy Polit. 1987;15(1):1–8.CrossRef
29.
go back to reference Aydon Simmons J. “Both sides now”: aligning external and internal branding for a socially responsible era. Mark Intell Plan. 2009;27(5):681–97.CrossRef Aydon Simmons J. “Both sides now”: aligning external and internal branding for a socially responsible era. Mark Intell Plan. 2009;27(5):681–97.CrossRef
30.
go back to reference Beresford P. PPI Or User Involvement: taking stock from a service user perspective in the twenty first century. Res Involv Engagem. 2020;6(1):1–5.CrossRef Beresford P. PPI Or User Involvement: taking stock from a service user perspective in the twenty first century. Res Involv Engagem. 2020;6(1):1–5.CrossRef
32.
go back to reference Russo J, Beresford P. Between exclusion and colonisation: seeking a place for mad people’s knowledge in academia. Disabil Soc. 2015;30(1):153–7.CrossRef Russo J, Beresford P. Between exclusion and colonisation: seeking a place for mad people’s knowledge in academia. Disabil Soc. 2015;30(1):153–7.CrossRef
33.
go back to reference Minkowitz T. Comments on draft General Comment 6 on Article 5, equality and non-discrimination. n.d., Centre for the HUman Rights of Users and Survivors of Psychiatry (CHRUSP). Minkowitz T. Comments on draft General Comment 6 on Article 5, equality and non-discrimination. n.d., Centre for the HUman Rights of Users and Survivors of Psychiatry (CHRUSP).
34.
go back to reference Freeman MC, et al. Reversing hard won victories in the name of human rights: a critique of the General Comment on Article 12 of the UN convention on the rights of persons with disabilities. Lancet Psychiatry. 2015;2(9):844–50.CrossRefPubMed Freeman MC, et al. Reversing hard won victories in the name of human rights: a critique of the General Comment on Article 12 of the UN convention on the rights of persons with disabilities. Lancet Psychiatry. 2015;2(9):844–50.CrossRefPubMed
35.
go back to reference Davar BV. From mental illness to disability: Choices for women users/survivors of psychiatry in self and identity constructions. Indian J Gend Stud. 2008;15(2):261–90.CrossRef Davar BV. From mental illness to disability: Choices for women users/survivors of psychiatry in self and identity constructions. Indian J Gend Stud. 2008;15(2):261–90.CrossRef
36.
go back to reference Davar B.V. Globalizing psychiatry and the case of ‘vanishing’alternatives in a neocolonial state. 2017. Davar B.V. Globalizing psychiatry and the case of ‘vanishing’alternatives in a neocolonial state. 2017.
37.
go back to reference Glasby J, Beresford P. Commentary and issues: who knows best? evidence-based practice and the service user contribution. Crit Soc Policy. 2006;26(1):268–84.CrossRef Glasby J, Beresford P. Commentary and issues: who knows best? evidence-based practice and the service user contribution. Crit Soc Policy. 2006;26(1):268–84.CrossRef
38.
go back to reference Faulkner A, Thomas P. User-led research and evidence-based medicine. Br J Psychiatry. 2002;180(1):1–3.CrossRefPubMed Faulkner A, Thomas P. User-led research and evidence-based medicine. Br J Psychiatry. 2002;180(1):1–3.CrossRefPubMed
39.
go back to reference Rose D. The contemporary state of service-user-led research. Lancet Psychiatry. 2015;2(11):959–60.CrossRefPubMed Rose D. The contemporary state of service-user-led research. Lancet Psychiatry. 2015;2(11):959–60.CrossRefPubMed
40.
go back to reference Proctor E, et al. Outcomes for implementation research: conceptual distinctions, measurement challenges, and research agenda. Adm Policy Ment Health. 2011;38(2):65–76.CrossRefPubMed Proctor E, et al. Outcomes for implementation research: conceptual distinctions, measurement challenges, and research agenda. Adm Policy Ment Health. 2011;38(2):65–76.CrossRefPubMed
41.
go back to reference Lee YY, et al. Cracks that Let the Light in: collective reflections on integrating lived experience of psychosis in research and policy in the context of a global commission. Commun Mental Health J. 2023; 59(5): 819–825. Lee YY, et al. Cracks that Let the Light in: collective reflections on integrating lived experience of psychosis in research and policy in the context of a global commission. Commun Mental Health J. 2023; 59(5): 819–825.
42.
go back to reference Sweeney A, et al. This is survivor research. Ross-on-Wye: PCCS Books; 2009. Sweeney A, et al. This is survivor research. Ross-on-Wye: PCCS Books; 2009.
43.
go back to reference Barnes M. and Cotterell P. Critical perspectives on user involvement. Policy Press; 2011. Barnes M. and Cotterell P. Critical perspectives on user involvement. Policy Press; 2011.
44.
go back to reference LeFrancois B, Menzies RJ, Reaume G. Introducing Mad Studies. In: LeFrançois BA, Menzies RJ, Reaume G, editors. Mad Matters. Toronto: Canadian Scholars Press Inc; 2013. p. 1–22. LeFrancois B, Menzies RJ, Reaume G. Introducing Mad Studies. In: LeFrançois BA, Menzies RJ, Reaume G, editors. Mad Matters. Toronto: Canadian Scholars Press Inc; 2013. p. 1–22.
45.
go back to reference Daley A, Costa L and Beresford , Madness, violence, and power: a critical collection. University of Toronto Press; 2019. Daley A, Costa L and Beresford , Madness, violence, and power: a critical collection. University of Toronto Press; 2019.
47.
go back to reference Beresford P, Nettle M and Perring R. Towards a social model of madness and distress. Exploring what service users say. York: Joseph Rowntree Foundation; 2010. p. 27–41. Beresford P, Nettle M and Perring R. Towards a social model of madness and distress. Exploring what service users say. York: Joseph Rowntree Foundation; 2010. p. 27–41.
48.
go back to reference Beresford P. All our welfare: towards participatory social policy. Bristol: Policy Press; 2016.CrossRef Beresford P. All our welfare: towards participatory social policy. Bristol: Policy Press; 2016.CrossRef
49.
go back to reference Beresford P, Russo J. The Routledge International Handbook of Mad Studies. London, New York, New Dehli: Routledge; 2022. Beresford P, Russo J. The Routledge International Handbook of Mad Studies. London, New York, New Dehli: Routledge; 2022.
52.
53.
go back to reference Shrout PE, Rodgers JL. Psychology, science, and knowledge construction: Broadening perspectives from the replication crisis. Annu Rev Psychol. 2018;69:487–510.CrossRefPubMed Shrout PE, Rodgers JL. Psychology, science, and knowledge construction: Broadening perspectives from the replication crisis. Annu Rev Psychol. 2018;69:487–510.CrossRefPubMed
54.
go back to reference Rogers A. Interview with Tom Insel, in Science, T. Insel, Editor. Science: New York; 2017. p. epub. Rogers A. Interview with Tom Insel, in Science, T. Insel, Editor. Science: New York; 2017. p. epub.
55.
go back to reference Murray RM. Mistakes I have made in my research career. Schizophr Bull. 2017;43(2):253–6. Murray RM. Mistakes I have made in my research career. Schizophr Bull. 2017;43(2):253–6.
56.
go back to reference Murray RM, et al. Should psychiatrists be more cautious about the long-term prophylactic use of antipsychotics? 2016; 209(5): 361–365. Murray RM, et al. Should psychiatrists be more cautious about the long-term prophylactic use of antipsychotics? 2016; 209(5): 361–365.
57.
go back to reference Patel V, et al. Transforming mental health systems globally: principles and policy recommendations. Lancet. 2023;402(10402):656–66.CrossRefPubMed Patel V, et al. Transforming mental health systems globally: principles and policy recommendations. Lancet. 2023;402(10402):656–66.CrossRefPubMed
Metadata
Title
PPI in psychiatry and the problem of knowledge
Authors
Diana Rose
Peter Beresford
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Psychiatry / Issue 1/2024
Electronic ISSN: 1471-244X
DOI
https://doi.org/10.1186/s12888-023-05398-0

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