Merinda's six minutes in Canberra
On Consumer Research, June 2004

"Consumer perspective participatory research challenges us. It's meant to. It challenges the way that research funds are distributed. It challenges the way we think up what we want to study. It challenges us about what questions to ask, who of, where and how. It deeply challenges what concepts and theories we develop. It challenges us (all of us) to look outside the taken for granted boundaries of our professional training and taken for granted assumptions about who is the expert and who is not."

Consumer perspective research is not just about adding a pinch of consumer to unchanged and unchallenged research assumptions, and stirring like mad. That cake will flop.

It is wrong to believe that there is not knowledge out there about how to do consumer driven, consumer perspective research. In many countries, especially in Africa, South America and the Sub-continent; and in some disciplines such as development studies this form of research is the taken-for-granted method of first preference. It is a political matter that it is not so in a health context in Australia.

I will admit straight up that I feel unsure about what is happening here today. It feels a bit like the seven of us here who come from and with a consumer perspective are kind of like an embryonic feminist movement and we’ve come to a workshop to talk about feminist research and find that the workshop has been organised by a committee that is predominantly made up of men and that the ratio of women to men participating is 7 to 28.

I’m concerned that we have a workshop today which has principles tabled before we have even met. I think that we need to be very careful and not just swoosh through an overladen agenda without due reflection and humility. To do this there are some preliminary understandings we need to have reached and shared:

1. We all need to have an understanding of the importance of consumer perspective participatory research;
2. We also need to have an understanding of the methodological and substantive political debates which have taken place within mainstream research and some ideas of our own about how consumer perspective participatory research can penetrate the establishment; and
3. We also need to have an understanding of consumer perspective participatory research as part of a growing consumer movement.

In a paper presented at a recent conference, David Webb, a consumer thinker and author describes the limitations of what he calls, ‘flatland science’. This is a science that reduces individual consciousness down to observable behaviours and thus fails to truly understand the ‘hardest part’ which is the meanings for consumers.

Webb argues that consumer perspective research needs to be able to access what he calls, ‘first person data’. This he describes as the essence of the lived experience translated by consumer researchers into language and conceptual pictures that can be understood by non-consumers. He argues that ‘first person methods’ have for too long missed out on research development funding and are now the area that needs funding priority. Taken for granted methods of ‘traditional science’ are useful and, indeed, important but they are not sufficient. Kathy has kindly copied copies of David’s paper for people to take.

I Finally I want to talk quickly about a piece of work I was involved in 2000 - 2001. I will use this as a small case study.

On the surface the study looked like a pretty standard piece of quantitative research but we added two additional feedback loops on to the stem of the research process. In the first loop researchers (a psychologist and an occupational therapist) went back to the people who had been involved in the initial study (all with a diagnosis of ‘Schizophrenia’) and fed back to them how they had gone and what the research had found out about them. They realised that even though finding out about individual people was NOT the purpose of the research it was an inevitable consequence of it. In the second loop two consumer researchers were employed to interview participants about their experience of the feedback.

What was so interesting about this piece of work was that over half the consumers the consumer researchers spoke to believed that what they had experienced during the stem of the research was a pass/fail test or exam. The researchers had, to their credit, anticipated the possibility of this and hoped they had very clearly explained that the research was NOT about passing or failing an assessment.

When interviewed by consumer researchers, however, participants showed very clearly that with all the best efforts in the world the initial researchers’ explanation of the meaning of the exercise was not ‘heard’ by many of the participants. Even more importantly most of these people who understood what they had experienced as a test had simply assumed that they had failed it because of a dominant life experience of ‘failure’. When interviewed by the consumer researchers people felt able to speak and they told us that the best thing about the feedback from the researchers was that the researchers were able to honestly tell them how they had gone and they had realised that they had not failed anything.

The importance of this story is twofold:

1. Firstly there are real ethical issues for researchers in this tale. How many other people with a ‘mental illness’ might have had their self esteem further knocked about by ‘innocent’ researchers undertaking research tasks before they are adequately trained by consumers to do so;
2. Secondly, it demonstrates that no matter ‘how quantitative’ the research is feedback processes to consumers are essential and that this should start to inform a new ethic in relation to mental health research;
3. Thirdly, consumers need to be a part of the process from the beginning. This particular project was hampered because there was great difficulty getting the money to fund the final (consumer controlled) loop of the research. This raised some significant ethical problems for the research team but in the end the project had to start with out consumers researchers on board and then bring them in much further down the track. This was far from ideal.
4. Finally, once on board, the consumer researchers immediately sensed there would be an issues about seeing the research as yet another ‘exam to fail’. Because of their own experiences of battered self esteems they intuitively suspected that others who had been through some of the same sorts of experiences might think in the same sorts of ways. That is, their hunch (hypothesis) was tested by this double loop feedback and was strongly supported by the data.

You will see reference to the paper we wrote on this piece of work in the blurb about me in the packages everyone was sent prior to this workshop.

Another consumer writer of some acclaim is Julie Shaw. She has a particular interest in the history and philosophy of science and has written several important papers that have been published in ‘consumer friendly’, ‘consumer acknowledging” publications. At the Mental Health Services Conference in the late 90s Julie wrote a paper titled intriguingly, “The Rat Speaks Back”. At the end of her presentation she concluded with five consumer perspective commandments for researchers working in the area of mental health. They were:

1. Honour the personhood of the other;
2. A robust consumer perspective should inform research about ‘consumers’ and ‘mental illness’ (and you can’t have a consumer perspective without employing real live consumers);
3. All peoples' time is valuable and should be generously remunerated;
4. Thou shalt not rob the creative output of another; and
5. Thou shalt acknowledge those elements of vicariousness and voyeurism which inform your work.