1. Service User and Collaborative Research Diana Rose, PhD Service User Research Enterprise (SURE) Institute of Psychiatry King’s College London

2. Overview My personal journey User Focused Monitoring (UFM) SURE Consumers’ Perspectives on ECT Participatory Research and User-Valued Outcome Measures Challenges

3. My Personal Journey Towards User-Led Research 1 I started my research career in 1976 and also had had a psychiatric diagnosis since 1971 I kept these two identities apart for fear of stigma from my work colleagues Eventually my mental health problems became apparent at work Medically retired in 1985

4. My Personal Journey Towards User-Led Research 2 Then followed 6 years as a ‘community mental patient’ – very distressing Joined the UK user movement Gradually realised that I could bring my two identities together and do user-focused research UFM SURE Obviously had to disclose – a relief Having a diagnosis became an asset

5. The Service User Research Enterprise (SURE) Nearly all staff are users or ex-users of mental health services – ‘insider knowledge’ Located at the Institute of Psychiatry, King’s College London Biggest psychiatric research institute in Europe Generally thought to be very conservative Warned in no uncertain terms when went there But quite positive about user-focused research SURE is meant to be collaborative

6. Benefits of Involving Service Users in Research Ask different questions – change the research agenda Ground research in the experiences of service users Use different methods eg participatory research Develop different instruments – user-valued outcome measures Shed new light on old questions

7. Example: Consumers’ Views of ECT Example of a ‘patient – centred systematic review’ Two main researchers had experienced ECT themselves Assembled 26 papers authored by clinical academics and 9 reports authored by users. Testimony data found on the internet and in a video archive

8. ECT: Themes for both Quantitative and Qualitative Analysis Perceived Benefit Permanent Memory Loss Information, Consent and Perceived Coercion Emotional Response

9. Meta-Analysis Professional papers reported much higher satisfaction with ECT than user reports. Bias in how user-led work chose its samples? Able to use own experience to critique the methods used in the clinical papers

10. Qualitative Analysis Testimonies – first-hand accounts of receiving ECT The project had a reference group which suggested initial categories for qualitative analysis Supplemented by careful reading of the material Used grids to analyse

11. Both Quantitative and Qualitative Analyses The main side-effect of ECT is long- term memory loss Professionals dispute this About half of people who have received the treatment say that they did not have sufficient information beforehand About one third said they did not freely sign the consent form

12. The Dispute Paper published in a high-profile medical journal Royal College of Psychiatrists (RCP) disputed what we had said about their leaflet Did not mention what they themselves had said about memory loss – that it did not happen

13. Policy Relevance of the Work National Institute of Clinical Excellence (NICE) conducting its own review of ECT as we were doing ours. Received very favourably Use of ECT now requires much tighter safeguards especially in relation to information and consent

14. Example 2 – User-Valued Outcome Measures Participatory research Attempts to reduce the power relations between researcher and researched In user-focused research, researchers have the same experiences as the participants All are mental health service users A new development even within participatory research

15. Procedure Focus Groups which meet twice Facilitators have experience of the treatment/service that is being evaluated Researchers draw up draft measure Taken to Expert Panels for amendment and refinement and that the language is their own language Feasibility study to make sure it is easy to complete – refinements all the way Psychometric testing About 150 participants involved in all

16. Example – in-patient care Much anecdotal evidence that profoundly disliked My experience too Wanted to do something more rigorous Will be evaluated in an RCT Collaborative but out part is user-led Just at the beginning Similar procedure with nurses

17. A Patient Speaks “They do have the staff. They do have the staff because you see them all walking around on reception or doing nothing some, and when you ask, they’re not available, which I think is dreadful.” “You queued up to see the doctor or banged on the door to see a nurse or try to catch a nurse. And if you tried to catch a nurse, you can bet your life they were too busy.”

18. A Nurse Speaks “A patient is saying I’m eight over 10 suicidal 10 being most suicidal and your saying well you still have to go home I mean …. you say what are we doing here this lady is saying I’m eight over 10 suicidal and your saying well if you cut your wrists go to A&E and we’re putting you on leave.”

19. Challenges 1 Frank scepticism Ticking the user box Colleagues want to use our name to improve their chances of getting grants At the same time are not taking it seriously

20. Challenges 2 Status and Power All projects we have been involved in are headed by professors of psychiatry User researchers may not have the same track record or are young Leads on projects can be patronising to user researchers Can dismiss user research as biased and anecdotal To preserve their position of power

21. Challenges 3 The Cochrane Hierarchy of Evidence In medicine randomised controlled trials (RCTs) are taken as the acme of science Least good evidence is expert opinion And this means the opinion of psychiatric experts Need to establish that service users are also experts Alter the Cochrane hierarchy

22. Challenges 4 User research criticised for being biased, anecdotal and carried out by people who are over-involved Although implicit some seem to think that irrational people (the mad) cannot engage in the supremely rational activity of science We epitomise ‘unreason’ (Foucault)

23. Next Steps We are ‘theory light’ Psychiatric research believes itself to be objective and scientific User research said to be the opposite of this But can say that all research comes from a certain ‘standpoint’ including mainstream research Could adapt some ideas from feminist ‘standpoint’ epistemology

24. Conclusion User and collaborative research has increased enormously in the UK during the past decade But there are many challenges Important to stay grounded in the experiences of service users and in the user movement – but this is difficult ‘Double identity’ – researchers see you as a user and users see you as a researcher Develop skills as a translator!