1. Genuine user involvement: what does it look like? Alison Faulkner Mental health researcher & service user

2. Genuine user involvement… Principles of service user involvement User involvement and the research process What does it look like?  Examples The way forward…?

3. Principles for user involvement Clarity about the potential for involvement & influence Respect for people’s views and experience Offer support and training User involvement policies & procedures An openness to change A base of support & accountability Offer payment & other incentives Ideas about negotiating differences Power and empowerment

4. Principles Active partnership Doing research with or by people who use services, not to, about or for them If research reflects the needs & views of people who use services it is more likely to produce results that can be used to improve practice in social care services. (INVOLVE)

5. Principles of service user involvement Clarity and transparency Empowerment Identity Commitment to change Respect Equal opportunities Theoretical approach Accountability Faulkner 2005 Clarity and transparency Diversity Respect Flexibility Accessibility SURGE 2005

6. Two examples… 1. Learning the lessons: a multi-method evaluation of dedicated community- based services for people with personality disorder. 2. Evaluation of Leeds survivor led crisis service.

7. ‘Learning the Lessons’ Service user involvement at all stages and all levels – from design to dissemination Project steering group, advisory group Service users as researchers, reviewers, interviewers. Integrated research team-based approach

8. LL: What was good about it? Support for Researchers:  systematic debriefing;  peer support  telephone contact with research supervisors Practical Arrangements  Paid as consultants & expenses;  Administrative support; e.g. information packs, accommodation and travel arrangements Involvement and ownership of process as a whole  Design, interviewing, analysis and report writing  Training and team work Good quality research

9. LL: What was challenging? Amount of work & co-ordination involved Expensive Time-consuming Personally challenging at times

10. Evaluation of Leeds Survivor Led Crisis Service Commissioned by the crisis service Service user led evaluation 4 service users recruited Designed and carried out evaluation together Report written together Fed back to staff and management group (but not formally disseminated)

11. Crisis service evaluation (2) A good experience for everyone Collaborative training Understanding of crisis Skills development Positive effects on service delivery Some uncomfortable findings Little external dissemination

12. The Research cycle… Identifying topics PrioritisingCommissioning Designing research Managing research Undertaking research Analysing & interpreting Disseminating research Evaluating research

13. Obstacles to genuine user involvement Identifying topics Prioritising  Commissioning Designing research Managing research Undertaking research Analysing & interpreting Disseminating Evaluating  Government agenda  Money  Pharmaceutical companies   Research careers  Need for publications  Concerns about quality  Attitudes:  ‘We know best’

14. Keeping the space Good service user involvement Information and Communication Respect Accessibility Flexibility Honesty, transparency Support Training Payment Resources

15. Difference Distress Dissent

16. Keeping the space New knowledge and theory Sharing the ‘research gaze’ Empowerment Making change happen Evidence - and what counts as evidence Skills

17. Some references Faulkner, A. (2004) The Ethics of Survivor Research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors. Bristol: Policy Press on behalf of the Joseph Rowntree Foundation. Service User Research Group England (2005) Guidance for Good Practice: Service user involvement in the UK Mental Health Research Network. London: UK MHRN. Crawford, M et al (2007) Learning the lessons: A multi-method evaluation of dedicated community-based services for people with personality disorder. National Coordinating Centre for NHS Service Delivery and Organisation R&D, Department of Health. Faulkner A, Gillespie S, Imlack S, Dhillon K & Crawford M (2008) Learning the lessons together. Mental Health Today Vol. 8 (1), February. INVOLVE (2007) Public Information Pack. www.invo.org.ukwww.invo.org.uk INVOLVE (2004) Involving the public in NHS, public health, and social care research: Briefing notes for researchers; as above. Direct Impact Service User and Carer Research Group (2004) Involving Service Users and Carers in Audit, Evaluation and Research and Other Projects to Improve and Develop Services. South West Yorkshire Mental Health NHS Trust.