User researchers; hostages or equal members of research teams?

Can user researchers better assure that projects are ethically sound?

Gunnhild Ruud LindvigOdd VoldenKlinikk for psykisk helse og rus,Sørlandet sykehus HF

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

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

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

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

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”

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:

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:

About the lecturers

•We`re Coming To Take You Away, Ha-haaa (Jerry Samuels)

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

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)

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

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

Themes from the literature on user involvement in research

•Sundfør, B.: På skolebenken - i Forskerskolen. I

Tidsskrift for psykisk helsearbeid, 1 – 2011.

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

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)

Borg and Kristiansen

•Why user involvement?

•Because it is a right

•Because it is right

•Because of the need for emancipation

Borg and Kristiansen

•Because of the need for balancing of power

•Because it will make changes in society more likely

• (Personal development)

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.

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

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

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).

Szmukler

•Three levels: consultation, collaboration and usercontrolled research.

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).

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.

Szmukler

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

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

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

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’.

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.

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

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.

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.

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’.

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.

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’.

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.

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

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)

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

Gunnhilds reflections on user involvement in research

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)

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