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Hill m &_wood_o_service_user_led_research_ne_med_soc
1. SERVICE-USER LED RESEARCH: A
REFLECTION UPON POLITICAL/ETHICAL
‘VIRTUES’ AND METHODOLOGICAL
AFFINITIES.
Dr. Mick Hill (Northumbria University) and Oliver Wood, Service User /
Researcher.
2. SERVICE USER INVOLVEMENT IN HEALTH AND SOCIAL
CARE RESEARCH
• Increasingly extolled as a virtue (Department of Health, 2006);
• Accorded a methodologically mainstream status of insofar as guidance is
extensively available (Hanley et al., 2004; Telford et al., 2004);
• Most usually moral and political precepts are advanced as a rationale (Entwistle et
al., 1998; Beresford, 2002).
E.G.
• Service user involvement is a matter of citizenship [The Council of Europe, 2000]
• Enhances the integrity and accountability of research [Department of Health,
2006].
Officially sanctioned / encouraged and YET POTENTIALLY DISRUPTIVE (or at least
difficult to reconcile) with established empirical traditions in health research.
3. [CLAIMED] POLITICAL / ETHICAL VIRTUES
Beresford and Wallcraft (1997) suggested:
• A concern with changing and equalising relationships between researchers and
‘research subjects’;
• A challenge to the hegemony of professional ‘expertise’;
• An egalitarian political commitment – inherently empowering and reciprocal;
• Affording priority to service user/carer agendæ, both in terms of methods and
outcomes;
• Desirability in terms of both ‘process’ and ‘outcome’;
• Enhanced capability in generating solutions to practical problems;
• Increased subsequent service user/carer involvement in service delivery.
All (to a greater or lesser extent) emblematic of ‘standpoint epistemologies’.
4. DEGREES OF INVOLVEMENT
DEGREE OF NAME OF LEVEL LEVEL
‘INVOLVEMENT’
•Citizen control 8
DEGREES OF CITIZEN POWER •Delegated power 7
•Partnership 6
•Placation 5
DEGREES OF TOKENISM •Consultation 4
•Informing 3
NON PARTICIPATION •Therapy 2
•Manipulation 1
Arnstein (1969: 216) ‘participation without redistribution of power is an empty and frustrating process
for the powerless.’
NB the ‘Realpolitik’ of service-user involvement in mental health research!
5. METHODOLOGICAL AFFINITIES: [1] SOCIOLOGICAL
CONCERNS WITH REPRESENTATION.
Williams (2000:73) – reports a long history within sociology in attempting to
clarify the ambivalent relationship between professional and lay
understandings of social reality, variously through:
• Direct representation and/or ‘reflexive’ interpretation; and,
• dialogical analysis, co-authorship and ‘respondent verification’.
However, in both circumstances professional researchers retain authorial
control in selectively determining what appears (and how it appears) in the
final text.
Also, both strategies imply that some special (professional) competence is
required in order to understand the ‘true’ meaning of the vernacular voice.
6. SOME METHODOLOGICAL AFFINITIES: [2] ODD BEDFELLOWS -
LYNCH AND ‘NORMAL SCIENCE’ METHODOLOGY
Lynch (1993:205) reported the virtues of ‘primitive natural science’ in
which the relevant techniques for the replication of scientific
‘discoveries’ were (by-in-large) considered as non-specialised
matters – and suggested ‘normal science’ methodology as a de-
privileging [palliative] equivalent approach in contemporary social
research.
Normal Science’ methodology:
‘nothing fancy’ but the ‘juxtaposition of (arguably) comparable
cases, citing testimonies and reports, drawing out common
themes, noting relevant discrepancies and trends, and [especially]
appealing to common intuitions and judgements.’ (Lynch,
1993:304).
7. SOME METHODOLOGICAL AFFINITIES: [2] ODD BEDFELLOWS -
LYNCH AND ‘NORMAL SCIENCE’ METHODOLOGY
Key principles / instructions include:
• Empirical investigation that is not the exclusive preserve of professional sociologists
(Lynch, 1993:300);
• Existing histories, philosophies, and sociologies remain significant to the extent that
findings are not pre-judged through the lenses of grand theories [AND / OR
EXISTING PROFESSIONAL DISCOURSES]; (Lynch ibid.: 301);
• Rather, the am is to create an ‘academic conversation’ by relating findings back to
the classic literatures. Lynch (1993: 306-7) asserted that ‘particular findings are likely
to hold differentiating and therapeutic implications for CLASSIC EPISTEMOLOGICAL
AND METHODOLOGICAL VERSIONS’.
Lynch’s claims are, of course, predicated upon ‘ethnomethodological
respecification’.
9. WORK IN PROGRESS: AN EXAMPLE OF USER-LED
RESEARCH
“Is there a pathway to recovery through care coordination?
Emancipatory action research with mental health service
users, carers, and professionals”.
Seeks to explore and reach a consensus around what
constitutes ‘effective’ care coordination and
‘recovery’ with service users, carers, professionals
and academics as researchers.
10. PROJECT STRUCTURE / PHASES
The project has 4 distinct phases - the intention being to be led by the voices, experiences and opinions of
mental health service users and carers at all stages from conception, planning, execution, analysis and the
final ‘application’ stage of the research project.
PHASE 1: Joining an existing mental health service user group. Discussion of previous
experiences of research. Members generate and finalise potential research topic.
Service-user / Carer Research course.Training Manual Final Version 2011.pdf
PHASE 2: Delphi study of stakeholders in the locality from health and social care in both
statutory and voluntary sectors. The results from the Delphi will feed into the
AUDIT
development of a topic guide and care coordination tools to be used in the next phase.
PHASE 3: Biographical narrative interviews with service users, carers and professionals
around ‘good practice’ in care coordination. Both phases 2 and 3 will feed into the next
phase.
PHASE 4: The development of a tool kit for best practice in care coordination.
11. REFLECTIONS (AND QUESTIONS)
Meaningful service-user involvement in mental health research presents challenges –
not only for positivist psychiatric discourse – but also for established positions
in social research / theory. For example:
• Do a priori political commitments matter beyond a broad egalitarian disposition in the
research process?
• Do ethnomethodologists have a monopoly on ‘indifferent scepticism’ towards professional
[both psychiatric AND sociological] versions of events?
• Research Training – empowerment / familiarisation OR indoctrination towards ‘professional
versions’?
• Can service-user led research circumvent the problem of ‘representation’ in professional
sociological accounts?
• Does a prior commitment to ‘knowledge-for-application’ necessarily result in changes in
practice?
12. REFERENCES AND BIBLIOGRAPHY
Arnstein, S (1969) ‘A Ladder of Citizens Participation’ Journal of American Institute of Planners, 7: 216-224.
Beresford, P. (2002) User involvement in research and evaluation: liberation or regulation? Social Policy and Society, 12: 95 - 101.
Beresford, P & Wallcraft, J. (1997) ‘Psychiatric System Survivors and Emancipatory Research: Issues, Overlaps and Differences’. In Doing
Disability Research IN Barnes, C & Mercer,G. [EDS.] Leeds: The Disability Press.
Council of Europe (2000) The development of structures for citizen and patient participation in the decision-making process affecting health
care. Recommendation (2000)5 adopted by the Committee of Ministers of the Council of Europe on 24 February 2000, Strasbourg: Council
of Europe, Department of Health.
Department of Health (2006) Best Research for Best Health: A New National Health Research Strategy. London: Department of Health.
Entwistle, V.A., Renfrew, M.J., Yearley, S., Forrester, J. & Lamont, T. (1998) ‘Lay perspectives: advantages for health research’. British Medical
Journal, 316, 463–466.
Hanley, B. Bradburn, J. Barnes, M. Evans, C. Goodare, H. Kelson, M. Kent, A. Oliver, S. Thomas, C. & Wallcraft, J. (2004) Involving the Service
User in NHS, Service User Health, and Social Care Research: Briefing Notes for Researchers. Eastleigh: INVOLVE. Available at
http://www.invo.org.uk (Accessed on 12 February 2012).
Lynch, M. (1993) Scientific practice and ordinary action. Ethnomethodology and social studies of science. Cambridge: Cambridge University Press.
Mental Health Providers Forum, (2008) Mental Health Recovery Star, User Guide. Available from
http://www.mhpf.org.uk/RecoveryStarResources.asp (Accessed 15th. February 2012)
Telford, R., Boote, J. & Cooper, C. (2004) What does it mean to involve consumers successfully in NHS research? A consensus study. Health
Expectations, 7, 209–220.
Williams, R. (2000) ‘Sociology and the vernacular voice: text, context, and the sociological imagination’, History of the Human Sciences, 13 (4):
73-95.