WHAT IS COLLABORATIVE RESEARCH WITH ‘SERVICE USERS’ AND OTHER ‘USER GROUPS’? Dr Jo Frankham Senior Research Fellow Centre for Education, Research and Evaluation Services (CERES) Liverpool John Moores University Paper (Partnership research: a review of approaches and challenges in conducting research in partnership with service users) at:

WHAT IS COLLABORATIVE RESEARCH WITH ‘SERVICE USERS’ AND OTHER ‘USER GROUPS’? Historical context and perceived benefits of ‘service user’ involvement in research Key issues in carrying out research with ‘service users’ Troubling the field of ‘service user’ involvement in research “The issues involved are complex and opinions often polarized, for user participation in research is still in its infancy, with many practical, ethical, moral, methodological and philosophical questions unanswered” (Nolan et al, 2007).

HISTORICAL CONTEXT 1970’s: Origins in the field of International Development Disabled activism ‘Critical’ social research and the rise in the use of qualitative methods 1980’s: Emancipatory and Participatory approaches developed 1990’s: New forms of governance including ‘partnership working’

PERCEIVED BENEFITS OF CARRYING OUT RESEARCH WITH ‘SERVICE USERS’ AND OTHER ‘USER GROUPS’ 1.Learning from the “first hand direct experience” (Beresford, 2002) of those most closely affected by the issues being explored. 2.It is argued that those on the ‘inside’ of an issue have a different epistemology (way of knowing, understanding, experiencing the world) and that this needs to be taken into account throughout the research process. 3.That the process of engagement in research can itself be transformative to the individuals involved. It is claimed that participating in research can be empowering, and further, that this empowerment may help build towards further transformation in the social world. 4.That the outcomes (including the forms of publication) of the research are likely to be different than those produced by ‘professional’ researchers and, it is claimed, more relevant both to service providers and users (Faulkner, 2005).

‘HOW TO’ GUIDES: Faulkner, A. (2005) Guidance for good practice: Service user involvement in UK Mental Health Research Network. UK Mental Health Research Network. Hanley, B., Bradburn, J., Barnes, M., Evans, C., Goodare, H., Kelson, M., Kent, A., Oliver, S., Thomas, S. and Wallcraft, J. (2004) Involving the public in NHS, public health and social care research: Briefing notes for researchers. Involve Support Unit.

PRACTICAL QUESTIONS IN RESEARCH WITH ‘SERVICE USERS’ Recruiting ‘service users’ to research Challenges/dilemmas in recruitment (and participation) Communication Research training Ethical issues

RECRUITING ‘SERVICE USERS’ TO RESEARCH Recruitment to/participation in/control of? Representative of the ‘general population’? Working with already established groups “Protracted engagement” (Barnes, 2003) User research

As Fisher (2002) describes, much ‘partnership’ work still involves “users being asked to join a process where the research issue and the methods have largely been defined beforehand, and where the outcome remains under the control of researchers” (p.306).

CHALLENGES/DILEMMAS IN RECRUITMENT (AND PARTICIPATION) Perceptions of role Reluctance to get involved Fluidity of roles/relationships/outcomes of work Expectations of you as researcher/friend? Conflicts of interest The ‘professional user’ and other (so-called) ‘non- representative’ users

COMMUNICATION Changing power relations Highly dependent on key individuals making it work Dealing with disagreement Heterarchy vs hierarchy Contracts/written agreements

Seddon et al (2004) describe how the process, “rests upon the active negotiation of expertise and authority, careful networking and opportunism in pursuit of local action through a variety of inter-linked and hybrid public-private spaces where debate and action is collectively determined by relevant members” (131).

RESEARCH TRAINING Do we ‘train’ service user researchers? Problems of ‘toolkit’ approaches to research ‘Learning on the job’ as an alternative Full integration Is ‘full participation’ the ideal/necessary/achievable?

ETHICAL ISSUES Wide-ranging, complex and highly context specific ‘Service User’ involvement – on any scale – is itself is an ethical issue New dimensions to protocols about ethics (protection from harm, confidentiality, anonymity, etc) The role of ethics committees ‘Ownership’ and authorship of the research Remuneration Outcomes and accountability

TROUBLING THE FIELD OF ‘SERVICE USER’ INVOLVEMENT IN RESEARCH Privileging ‘personal experience’ Problematising ‘learning’ The ‘empowerment’ of ‘service users’

SPEAKING FROM ‘PERSONAL EXPERIENCE’ What is ‘knowing’? Do we contribute to new essentialisms through privileging personal experience? Are we privileging knowledge or knowers? What is the place of language, discourse, context, history in the stories that are told?

LEARNING WITHIN RESEARCH PARTNERSHIPS What is learning as characterized within these research partnerships? Why is learning assumed to be taking place within these partnerships? Might intentions other than learning take precedence in these partnerships?

RESEARCH WITH ‘SERVICE USERS’: AN OPPORTUNITY FOR EMPOWERMENT? What is ‘empowerment’? Under-theorised and under-debated. Official sanctioning of ‘user’ voice more about ‘managing change’ than about participatory democracy? What about other legitimate concerns and demands and the wider policy context?