1 Keeping Service User Involvement in Research Honest Professor Hugh McLaughlin 10 th July 2012

Dame Sally Davies Director General of Research and Development, Department of Health I have always taken the view that public involvement in research should be the rule not the exception. It is fundamental to ensure high quality research that brings real benefits for patients, the public and the NHS p.4 Staley (2009)

Service User Researchers Direct –current or recent service users Indirect –similar services elsewhere Alternative –service users of other types of services

Which service users? Limitations Some groups more ‘acceptable’ than others Convicted paedophiles Communication difficulties Sexually transmitted diseases Illegal immigrants

Levels of Involvement Tokenism Consultation Collaboration Service User Controlled

User–controlled Research the empowerment of service users and the improvement of their lives (through both the process and the purpose of research); being part of a broader process of making social and political change; more equal relations of research production (where the people who carry out the research and are the subject of the research relate to each other on much more equal terms); being based on social models of understanding and interpretation (like the social model of disability). But no agreement re who should do it (Turner and Beresford, 2005, p vi)

Benefits of Service User Research Focusing and prioritising the research Accessibility of research tools Enhancing range and quality of data Analytical meanings and connections are not misunderstood Recommendations include perspective of service users likely to lead to greater ownership Dissemination

Why researchers don’t involve service users in research Lack of representativeness The usual suspects Recruitment and training Too expensive Research not objective SU and carer expectations unrealistic Ethical approval Research selectivity exercise

Comment It is as absurd to believe that service user (co-) researchers will inevitably improve the research, this is as misguided as believing only academic researchers can undertake ‘real’ research.

Knowledge Claims Qualitative research preferred Same or different standard Standpoint theory Mature enough to be evaluated on the same standards as other research

Knowledge claims One key quality distinguishes such knowledge from all others involved in social care and social policy provision. They alone are based on direct experience of such policy and provision from the receiving end. Service users’ knowledges grow out of their personal and collective experience of policy, practice and services (Beresford, 2000, p. 493).

Critique While we must recognize that people in different social locations may have divergent perspectives giving them distinctive insights, it is not clear why we should believe the implausible claim that some category of people has privileged access to knowledge while others are blinded by ideology (Hammersley, 1995, p. 71).

Conclusions Moreover, if we accept that differing types of knowledge and experience contribute to a full understanding then no one has privileged ‘insider’ knowledge, but everyone has differing knowledge from which everybody can learn. Herein lies the nub of the issue. (Nolan et al., 2007a, p. 190).

Conclusions Neither panacea nor fad Research approach in own right Complementarity and additionality Not to be entered into lightly

Useful publications Lowes, L. and Hulatt, I.(2005) (eds), Involving Service Users in Health and Social Care Research, London: Routledge Nolan, M. Hanson, E. Grant, G. and Keady, J. (2008) (eds) User Participation in Health and Social Care Research, Maidenhead: Open University Press McLaughlin, H. (2010) Keeping service user involvement in research honest, British Journal of Social Work, 40, McLaughlin, H (2009) Service User Research in Health and Social Care, London: Sage. McLaughlin, H. (2012) Understanding Social Work Research (2 nd edn.), London: Sage McLaughlin, H. (2006) Involving Young Service Users as Co-researchers: Possibilities, benefits and costs, British Journal of Social Work, 36 (8) McLaughlin, H. (2005) Young service users as co-researchers: methodological problems and possibilities; Qualitative Social Work, 4: (2) Staley, K. (2009) Exploring Impact: Public involvement in NHS, public health and social care research, Eastleigh: Involve