We need user-led research more now than ever before…

2. We need user-led research more now than ever before… Alison Faulkner Independent Service User Researcher & Trainer

3. We need user-led research more now than ever before… • A few caveats… • Research agenda of service users/survivors • Changes taking place in the research world • The role of the mental health charities • What is the way forward for user/survivor research?

4. 1. A few caveats… • This is my own perspective • Intended as a think-piece • Based on my experience of the mental health research world • Quite a lot of questions

5. A continuum of ‘involvement’ Consultation Collaboration Control • Researcher-led User-led • Joint

6. Arnstein’s ladder of participation • Citizen control • Delegated power • Partnerships • Placation or tokenism • Consultation • Information Community development Community engagement

7. 2. What is the service user/survivor research agenda? • Research priorities • Active participation in the process • Asking different questions / getting different answers • Methodology? • Theoretical underpinnings • Ethical practice • Participation in the process • Feedback to participants • Change

8. 2b The NHS R & D Strategic Review of Mental Health:priorities identified by service user panel • support for full involvement of service users in the research process • race equality • user-defined outcomes • holistic research approach • research reviews to be more inclusive: to include ‘grey literature’ • social approaches to mental health – moving beyond and outside of the medical model • researching positive risk management • self-management (as against ‘self-help interventions’ which do not redress the balance of power) • evaluation of user-controlled services • research into models of user involvement

9. 3. Changes taking place in the research world • ‘Best research for best health’: the new R&D strategy for England • NIHR • UKCRC, UKCRN • The Research Networks • Working with industry • The Cooksey Review • Review of RAE

10. 3a Best Research for Best Health: A new national health research strategy • Our vision is to improve the health and wealth of the nation through research. • We aim to create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research, focused on the needs of patients and the public.

11. 3a. Best Research for Best Health: A new national health research strategy Objectives • Expand and build a world-class NHS research infrastructure focused on delivering benefits to patients and the public • Contribute to international excellence in experimental and translational medicine and innovation in healthcare • Build on our reputation as a leading country for publicly funded research • Become a leading country for conducting clinical research in partnership with and for industry • Develop legislation and guidelines that create a vibrant and efficient research environment • Respect ethical principles for health research.

12. 3b The UKCRC “A partnership working to establish the UK as a world leader in clinical research, by harnessing the power of the NHS” • UKCRC's aim is to re-engineer the environment in which clinical research is conducted in the UK, to benefit the public and patients by improving national health and increasing national wealth. • The UKCRC’s strength is that it brings together the major stakeholders that influence clinical research in the UK and particularly in the NHS.

13. 3c The UKCRN … • Ensuring that patients and healthcare professionals from all parts of the country are able to participate in and benefit from clinical research • 6 Topic Specific Research Networks & 29 Local Research Networks • Putting pressure on the RNs to work with industry

14. 3c The Mental Health Research Network (MHRN) “Providing the infrastructure to support large scale, high quality research in mental health and social care." • 8 regional hubs • Adoptions Committee • SURGE (Service User Research Group England) • Research interest groups

15. The new structure…? UKCRC ££ Work with Industry UKCRN DRN DNDRN SRN NCRN MHRN MCRN Patient & Public Involvement

16. NHS patients for sale!? • Large single funding body distant from patient and service user concerns • Emphasis on (participation in) large scale clinical trials • Funding follows the patient • Networks are set up to encourage large scale trials • Strong emphasis on working with industry (at the potential expense of user & carer involvement) • A separate dedicated adoptions committee for industry trials • Who is keeping an eye on ethics & good practice? • Loss of service user research agenda

17. 4. The role of the (mental health) charities • Historically important in supporting service user/survivor research – e.g. Mental Health Foundation, Sainsbury Centre for Mental Health; • Loss of some strong initiatives (User Focused Monitoring, Strategies for Living); • Funding shortages, pressures and biases affecting them too

18. 5. We need user-led/survivor research! • To: • Stay in touch with and strengthen our agenda • Stay in touch with the grassroots experience • Ensure research is meaningful, relevant to people’s lived experience • But: • Who is doing it and where? • Who is funding/ who will fund it? • Politics vs. pragmatism • Language of participation • Capacity building • Power and empowerment

19. Arnstein’s ladder of participation • Citizen control • Delegated power • Partnerships • Placation or tokenism • Consultation • Information Community development Community engagement

20. Why research? “Research has its part to play in developing solidarity among psychiatric system survivors, and helping to raise the expectations of those who have been ‘educated’ to live with an unacceptable quality of life. Survival research can be a small but key part in the move to seize freedom within an oppressive and excluding society.” Viv Lindow, Survivor Researcher