Hill m &_wood_o_service_user_led_research_ne_med_soc
SERVICE-USER LED RESEARCH: A REFLECTION UPON POLITICAL/ETHICAL ‘VIRTUES’ AND METHODOLOGICAL AFFINITIES.Dr. Mick Hill (Northumbria University) and Oliver Wood, Service User /Researcher.
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.
[CLAIMED] POLITICAL / ETHICAL VIRTUESBeresford 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’.
DEGREES OF INVOLVEMENTDEGREE OF NAME OF LEVEL LEVEL‘INVOLVEMENT’ •Citizen control 8DEGREES OF CITIZEN POWER •Delegated power 7 •Partnership 6 •Placation 5DEGREES OF TOKENISM •Consultation 4 •Informing 3NON 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!
METHODOLOGICAL AFFINITIES:  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.
SOME METHODOLOGICAL AFFINITIES:  ODD BEDFELLOWS - LYNCH AND ‘NORMAL SCIENCE’ METHODOLOGYLynch (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).
SOME METHODOLOGICAL AFFINITIES:  ODD BEDFELLOWS - LYNCH AND ‘NORMAL SCIENCE’ METHODOLOGYKey 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’.
A PROFESSIONAL CONSTRUCTION: THE RECOVERY STAR (MHPF, 2008)
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.
PROJECT STRUCTURE / PHASESThe 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.
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?
REFERENCES AND BIBLIOGRAPHYArnstein, 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 healthcare. 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.