Consumer Directed Research Group

The Consumer-Directed Research Group, facilitated by Associate Professor Linda Viney, involves research relevant to consumers of mental health services. This group has nine principles that guide its conduct with the aim of increasing consumers’ participation as mental health researchers. These nine guidelines are now stated:

1. Approaches to Research: Underpinning research methods are approaches to research that include assumptions about how people operate and of what constitutes evidence and knowledge. Not only the specific methods used, however the overall process of research needs to foster collaboration.
2. Methods: At a concrete level, a person's experience of research is largely guided by the method that was used, including the attitude of the researcher who used it. Hence, to promote collaborative and empowering research, appropriate methods are a good starting point. The second guideline is to choose methods that will foster collaboration with participants, for example by allowing them to "tell their story". Conducting research with consumers using instruments such as the Minnesota Multiphasic Personality Inventory (MMPI) which includes phrases such as "psychopathic deviate" is obviously unlikely to increase collaboration. Hence, the acceptability and utility of a method from a consumer perspective becomes as important to appropriate research as reliability and validity is in quantitative research.
3. Acknowledgment of Inappropriate Past Research: A starting point in terms of developing genuine collaboration between consumer researchers and established researchers is the acknowledgment from established researchers that much of research conducted in the past has not been to the benefit of mental health consumers. This is a controversial point, with parallels to the “Stolen Generation” apology issue with indigenous Australians. The third guideline, particularly to established researchers is that much of the clinical and research training that you have received and been equipped with may be inappropriate for collaborative consumer mental health research.
4. Consumers as Researchers not Just Participants: While to some it is obvious, to many individuals and organisations it is a bold step to recognise the value of mental health consumers conducting research. It is easier to state that consumers participate in research or are consulted about research. The fourth guideline is to promote within mental health organisations the development of consumer-researchers alongside established researchers using appropriate approaches. In time consumer researchers can become established researchers and the need for the distinction will diminish.
5. Train and Pay Consumer Researchers in Research Skills: With the increase in consumer representation in Australia and some other nations it has not been uncommon to train consumer representatives in skills to maximise their effectiveness in representation and also remunerate consumer representatives. The fifth guideline is that the same should occur with research skills. Consumer researchers who bring their personal expertise, if not already skilled in appropriate research methods and approaches should be trained in such approaches. Moreover, they need to be paid!
6. Train Established Researchers in Appropriate Approaches and Methods: Appropriate methods and approaches in consumer mental health research are not well known, “ready-to-hand” or valued. Established researchers can learn and relearn new approaches. The sixth guideline is to organise training for the established researchers in these approaches in addition to training for the consumer researchers. (Train these groups together).
7. Establish Longer Term Relationships and Research Programs Rather than Individual Projects: Like traditional research, it is advantageous to develop broader research programs into which individual projects can fit. To do this long term relationships need to be developed and established researchers need to see beyond their next publication.
8. Benefit Participants rather than Do No Harm to Participants: Similar to the third guideline of acknowledging previous research that may have been detrimental to mental health consumers, it is useful to review a basic ethic of human research ethics. Ethics committees around the country and the world review projects to ensure that the research “does no harm” to the participants. The traditional notion of research is that somewhere, some day this accumulation of knowledge will be for the greater good. The eighth guideline is that this ethical threshold need be increased for mental health consumer research. The question needs to be asked “Does this research benefit its participants in the here and now?” “Does the research have local tangible implications?”
9. Invitational Mood: A more general recommendation is that of the approach to people and knowledge of all stakeholders. This final guideline relates to the issue of “expert knowledge” and use of language of consumer researchers about established researchers and vice versa. The final guideline is that all meetings between stakeholders in mental health consumer research attempt to use the “invitational mood” rather than the “indicative mood” (McWilliams, 1996). McWilliams (1996) asserts that the indicative mood is demonstrated when we use the verb ‘to be’ (is, are, was, were, am, be, been, being) we attribute a fixed nature to a person or event. Consider the statement a person “is a schizophrenic”, or a “person has been an academic for many years”. The alternative is the invitational mood in which knowledge is always hypothetical, and the person takes responsibility for their construing. Hence, a person will state claims as invitations, questions for which they take responsibility eg “I’m thinking that it could be…” The final guideline is for all stakeholders to take this invitational mood to mental health consumer research.

Members of the successful 2001 ARC SPIRT Round- "Consumers evaluating a mental health service".

(from left) Dr Lindsay Oades, Associate Professor Linda Viney, Rebecca McLeod, Gordon Lambert, Jon Strang.

Contact Dr Lindsay Oades at lindsay_oades@uow.edu.au if you require more information on this group.