1. Gareth Edwards Director, Positive Thinking Service User Academic, Centre for MH Research, University of Auckland

2. Overview Personal Pathway – How did I become a “service user academic” for the Centre for Mental Health Research? Service Users & Research – Adding Value & The 4 C Words Basic Principles & Good Practice – Example: Media Reporting of Suicide

3. Personal Pathway BSc (Hons) Psychology (2:1) Sheffield Hallam University, UK 1996 MSc Applied Artificial Intelligence Aberdeen University, UK 1997 PhD ‘Creativity & Computers’ Sheffield Hallam University, UK 1998 Academic...

4. Personal Pathway Bipolar Disorder (Type 1) National Health Service, UK 4 Month Residential Tough Assessment! 1999 Nurse Aide, Researcher, Trainer, Analyst, Project Manager MH & A, Homelessness, Research, Funding NGO, DHB, Govt, Uni 2000 - 2006 Service User... Service Provider

5. Personal Pathway Formed Positive Thinking Research & Development Service User Focussed Range of Govt, DHB, NGO, Uni projects in NZ & Overseas 2006 → Joined CMHR, UoA Collaboration & Service User Advice Research Team Member Board of Governance Faculty of Medical Science 2007 → Service User Freelancer... Academic

6. Service Users & Research Direct lived experience – What works, what doesn’t, improving lives & services Alternative to pathological view of ‘disease and disorder’ – Social model of disability, inclusion, equality & empowerment Holistic context – Mental Health + – Socio-economic & political life – Physical, cultural & spiritual well being Different agenda & approaches – Relevant research questions/priorities – Focus on action research, evaluation and meaningful outcomes Enhances participation and buy in – Support participation and disclosure (to be confirmed …) and dissemination/uptake Different Perspective Adding Value

7. Service Users & Research Consultation – Provide opinion on research (e.g. proposal, paper etc) – Influence but no power Collaboration – Active ongoing partnership – Involved in decision making in some/all research stages with other researchers Control – Service User led research – Involved in decision making in all research stages with or without other researchers The first 3 C words

8. Service Users & Research Insufficient funding – Resources for permanent and project roles Capacity & professional development – Few SU researchers, lack of training & career pathways Representation – One voice, multiple perspectives Inadequate infrastructural support – Practical, technical, emotional/psychological Exclusivity, hierarchies & gatekeeping – Academic elitism, power dynamics, entry requirements Resistance & hostility – Working in partnership can still cause problems The 4 th C Word... Challenges!

9. Basic Principles Involve service users from the start and maintain their involvement Be clear about why service users are involved and agree roles Budget for and pay service users consistent with other researchers Respect the skills, knowledge and experience that service users bring Provide adequate training, personal support and supervision Establish good relationships between service users and other researchers Ensure researchers have the necessary skills to involve service users Involve service users in decisions and planning Provide details on service user involvement in reports and publications Make the research findings accessible and meaningful to service users

10. Good Practice Doing research with people rather than to people – Involve, NHS, UK (2001) Meaningful SU involvement in the whole research process is invaluable – Sainsbury Centre for Mental Health, UK (2006) Good practice advice is that users should be involved in all stages of the research process – Royal College of Nurses, UK (2007)

11. Research Process Agenda Setting & Funding PlanningImplementingDisseminatingTranslatingReviewing

12. Media Reporting of Suicide Proposal drafting & reviewing Budgeted role on the research team Planning Research team member plus project coordination Methodology & approach decision making Data analysis & case study (‘Suicide Online’) Report & paper writing & review Implementing Technical report to funder 2 published papers Disseminating

13. Service Users & Research A woman walking down the street comes across a drunken man looking for his wallet under a lamp post... “Are you sure this is where you dropped it” she asked the man? “Oh no” replied the man... “I dropped it in the gutter over there... but I can see much better here”

14. Service Users & Research “I suspect that sometimes mental health researchers are a little like this misguided man. However, instead of a wallet, they have misplaced something called ‘the right questions’ and ‘relevant research’. Unlike the drunken man, they do not know they are focusing their search in the wrong area. However, just as the inebriated man would be aided by a torch, the researchers would benefit from the illumination that could be provided by working in partnership with consumers with lived experience of a mental disorder.” Griffiths. K (2004) Promoting consumer participation in mental health research in Australia. The Australian Health Consumer, Issue 3, p. 11.

15. Resources Mental Health Service User Leadership in Research – Callard, F. & Rose, D. (2010) World Health Organisation Handbook of Service User Involvement in Mental Health Research – Wallcraft, J. et al (2009) A Review of Service User Involvement in Prison Mental Health Research – Sainsbury Centre for Mental Health (2008) User Involvement in Research by Nurses – Royal College of Nurses, UK (2007) Brief Guide to Involving Mental Health Service Users in Research – Service User Research Group for England (SURGE) (2006) Getting Involved in Research: A guide for consumers. – Royle, J. et al, Involve Support Unit (2001)