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. Stages of User Involvement in Research Consultation – weak Collaboration Researcher initiated Jointly initiated User initiated User controlled Many funding bodies now use these stages because they want user involvement in research

6. User-Focused Monitoring (UFM) Co-ordinator and local researchers are all service users Co-ordinator trains local researchers in basic research skills Questionnaire development Questionnaires are different to professional ones Interviewing techniques Participants say the interviews are more open and relaxed Quite like your model of ‘User Interview User’ User controlled except the budget

7. The Service User Research Enterprise (SURE) 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

8. 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

9. 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

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

11. 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

12. 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

13. 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

14. 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 Did they want to say that irrational (mad) people could not do something as supremely rational as research?

15. 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

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

17. Continuity of Care - Design Iterative process of conducting focus groups, analysing and bringing results of analyses back to second focus group then re-analysing Draft measures Expert panels from focus group members and independent users and carers to comment on the measures Draft measures refined Piloting with new users and carers 122 users and carers participated in all

18. First Focus Group Tell your story of contact with mental health services Idea of continuity of care introduced Most had not heard of this but were able to grasp it once explained to them

19. Second focus group 1 Results of analysis fed back to participants – checking members’ categories. Do they want to change, retract, reinforce anything? Mostly wanted to reinforce.

20. Second focus group 2 In the interim, had drawn up 12 elements of continuity of care. Six from the professional literature reworded to make them accessible. Six from the first discussion (for each group) where continuity had been raised.

21. Second focus group 3 Participants invited to rank in order of importance the 12 elements of continuity. First they did this individually and then collectively.

22. Constructing draft measures Focus group results then used to create two draft measures of continuity of care – one for users and one for carers Domains - each had 3 questions and an open-ended space for comments

23. First round of expert panels Draft measures taken to expert panels drawn from focus group members. Users and carers are experts Asked to comment, add domains, what did they think and is this their normal language.

24. Second round of expert panels Second round of expert panels independent of focus groups Still users and carers Given the same tasks including asking whether language of instruments was their normal language Some changes made

25. Piloting Measures piloted with 67 users and carers. Mostly to gauge the feasibility of the questionnaires. Changed them throughout this process until we were sure they were easy to complete and nothing had been missed.

26. Some Domains Users Access to services Information Hospital discharge Out of hours services Peer support Avoiding services Repeating life history Carers Information Issue of confidentiality Hospital discharge Relative receiving care that they need Carers’ groups

27. Psychometric Testing Checked for reliability and validity Results good User focused measures can have robust psychometric properties This is now our model for producing user- valued outcome measures

28. 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

29. 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

30. 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

31. 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 (users) cannot engage in the supremely rational activity of science For example, dispute with Royal College of Psychiatrists over ECT work

32. 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

33. 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