1. User researchers; hostages or equal members of research teams? Can user researchers better assure that projects are ethically sound? Gunnhild Ruud Lindvig Odd Volden Klinikk for psykisk helse og rus, Sørlandet sykehus HF

2. Agenda About the lecturers User involvement in general Themes from the literature on user involvement in research Gunnhilds reflections on user involvement in research Two questions – two answers

3. About the lecturers We are not very capable of The Queens English We are not very capable of any other kind of english, either We are born and raised in the same region of Norway

4. About the lecturers Our version of the english language is traditionally called ”Tasta english” Tasta is a part of the city of Stavanger And we aren`t even from the city of Stavanger

5. About the lecturers This is going to be a tough case For us, and even more so for you But we have decided to give it a try

6. About the lecturers Like the young norwegian who stole a small air plane from the airport of Trondheim When the airport tower got in touch with him, his first words were: ”I`m drunk, and I don`t know how to aviate either”

7. About the lecturers Well, at least we are sober At least we are on the ground Do not underestimate us Even if our english stinks, we are capable of anything Because, paraphrased after some of our friends:

8. About the lecturers We Know What We Like, And We Like What We Know (Genesis) You Can`t Take That Away From Us (Ira Gershwin) And if you try:

9. About the lecturers We`re Coming To Take You Away, Ha-haaa (Jerry Samuels)

10. About the lecturers Gunnhild: A masters degree in drama and education Ten years of user experience from the mental health field Working as an experience consultant in the mental health services in a hospital (Sørlandet sykehus) Just started participating as a co-researcher in a PhD-project about young users of mental health services and their own descriptions of recovery

11. About the lecturers Odd: A masters degree in education 20 years of user experience from the mental health field 12 years of experience as a users representative Participated in userled research Author of an essay on user involvement in research Eight years of experience from a controll comittee for patients under forced treatment Writer and teacher This year also working in the services (for children and youth)

12. User involvement in general From health institutions to health markets From patients to users / consumers / customers From professional verdicts to customers choices From user involvement to users perspective

13. Themes from the literature on user involvement in research Borg, M. og Kristiansen, K. (red.) (2009): Medforskning – å forske sammen om psykisk helse. Oslo : Universitetsforlaget Szmukler, G.: Service users in research and a ‘well ordered science’. Journal of Mental Health, April 2009; 18(2): 87–90

14. Themes from the literature on user involvement in research Sundfør, B.: På skolebenken - i Forskerskolen. I Tidsskrift for psykisk helsearbeid, 1 – 2011.

15. Borg and Kristiansen We have done a lot of harm and we have failed when we have tried to gain knowledge by trying to do research on persons with serious mental illness – now is the time to do research together with persons with such experiences

16. Borg and Kristiansen Users involvement in research is about power Women, afroamericans and persons with physical disabilities were among the first groups to take active part in research Participatory Action Research (PAR)

17. Borg and Kristiansen Why user involvement? Because it is a right Because it is right Because of the need for emancipation

18. Borg and Kristiansen Because of the need for balancing of power Because it will make changes in society more likely (Personal development)

19. Szmukler Service user involvement in research is little over a decade old. It is highly likely that research has much to gain by involving service users.

20. Szmukler Among the benefits are: Increasing relevance of the research Enriching researchers’ understanding of the illness Ensuring the questions being asked are meaningful, Improving the design of a study

21. Szmukler Choosing appropriate outcome measures Generally preserving a focus on the meanings of the research for those with the illness Better recruitment to studies More open responses from research participants who are more likely to feel their interests are being addressed

22. Szmukler Less likelihood of dropouts Fresh insights in interpreting the results Service user support may assist dissemination and implementation of research findings More ethically sound research For example, by defining acceptable limits of controversial research, and providing better explanations when seeking consent. (Staley & Minogue, 2006).

23. Szmukler Three levels: consultation, collaboration and usercontrolled research.

24. Szmukler However, serious obstacles to service user involvement in research are encountered For example, a reluctance on the part of researchers who may fear losing control of the research, or a reduction in its quality Inadequate resources available to train and support service user researchers in necessary ways (MHRN Good Practice Guidelines).

25. Szmukler As service user involvement in research is still relatively new, ideas about its scope and how it might be best realised are still evolving. Current ideas of service user involvement in research may not be ambitious enough in their scope.

26. Szmukler Philip Kitcher, a philosopher of science at Columbia New York, presents a set of arguments that are very persuasive.

27. Szmukler Conventionally, what is to be researched, and how, has been determined by ‘elites’ – mostly by communities of scientists engaged in a particular field But increasingly by scientists in association with privileged groups of outsiders, predominantly the funders of research

28. Szmukler Some funders, such as government departments or research councils are seen as representing society, though rarely is that representation wide Others, such as charities represent narrower interest groups, often in respect of a single disease or a narrow range of diseases. Another paymaster, industry, has a necessary interest in making a profit

29. Szmukler Kitcher argues that elitism is an unacceptable basis for setting a research agenda. Science has the potential to improve the lives of many, and their voices need to be heard. However, a simple voting scheme cannot be supported. Such ‘vulgar democracy’ as a means for setting the agenda, Kitcher warns, would lead to a ‘tyranny of the ignorant’.

30. Szmukler Kitcher proposes that the proper basis for a ‘well-ordered’ science is ‘enlightened democracy’. Here decisions would be made on the basis of what he terms ‘tutored’ preferences. Interest groups would be ‘tutored’ by scientists about what is known so far, how we know it, and the prospects for knowing more about a particular problem.

31. Szmukler Deliberations must involve a two-way ‘tutoring’ process - non-scientist deliberators also tutor the scientists about the personal meanings, social value and political implications that ‘their’ knowledge may carry. Tutored preferences will thus lead to a science which is ‘well-ordered’ – that is with an agenda constructed by informed deliberators who will take account of competing interests

32. Szmukler For service users the science can be hugely difficult to understand, as can be the convoluted and competitive workings of the academic world. For the scientist, the lived experience of mental illness in all of its complexity and implications, can be difficult to grasp or even acknowledge, and it is easy to become complicit in the exclusion of the voices of a stigmatised group.

33. Szmukler Progress towards a ‘well-ordered science’ in mental health is the most important in the medical or human sciences. This is because ‘values’ are so much more clearly at issue than, say, in cardiovascular disease or diabetes. So much is contested in mental health – even the idea of ‘illness’ itself, and thus of the value of entire domains of science as applied to the problems of mental health.

34. Szmukler Most would also agree that mental health service users are, of all patient groups, the one with most to gain from the emancipatory implications of a ‘well- ordered science’.

35. Szmukler The NIHR Mental Health Research Network (MHRN) offers an important, practical opportunity to establish something approaching a ‘well ordered science’, albeit within the specific domain of mental health. Established in 2003, the role of the MHRN is to create an infrastructure for England that will facilitate high quality research, large enough so that findings are generalisable across communities in England.

36. Szmukler There are currently more than 160 projects on the network. Service user involvement in all aspects of the research enterprise – formulating priorities, research questions, design and methods, outcome measures, analysis and interpretation of results, dissemination – is an essential component of MHRN’s stated mission. The Service Users in Research (formerly known as SURGE) is the medium through which MHRN seeks to achieve this goal. Service Users in Research comprises a central strategic and coordinating group and representatives from each of the ‘hubs’.

37. Szmukler User-led or user-controlled research is difficult to achieve on the MHRN; the vast majority of projects are large and are carried out by multidisciplinary teams. But we aim for all to have significant service user involvement. In a well-ordered science, who should do the research is dependent on the conclusions of deliberations about who is best placed to do it.

38. Sundfør Education of user researchers (Bergen) Now: Høgskolen i Buskerud The key word is economy Not decent payment of user researchers Need for a change in the scientific community

39. Sundfør Interesting personal reflections on different themes and stages of the process of user research For those who want to dig deeper into this theme, it could be a good idea to read Sundførs essay and compare his experiences to Gunnhilds (coming up soon)

40. Sundfør When applying for funds, researchers must seek to get funds for user researchers too Institutions of research must get information and education about the potential of user research

41. Gunnhilds reflections on user involvement in research

42. Two questions – two answers User researchers; hostages or equal members of research teams? The main challenge for user researchers is not to avoid being hostages; we can take care of ourselves and our interests The main challenge for user researchers is that too many clinicians and researchers, mainly those of medical and psychoterapeutic persuasions, see themselves as noblesse (and the administrators and politicians are ignorant of this problem)

43. Two questions - two answers Can user researchers better assure that projects are ethically sound? Researchers and user researchers together will assure that projects are twice as relevant and ethically sound This may not be supported by research yet, but as our friend Szmukler states: It is highly likely