Research That Matters (January 17 - 20, 2008)

PURPOSE: Mental health consumers have moved from passive recipients of care to an active range of roles both within the mental health system and in consumer-run agencies. While there is research on consumer inclusion in the mental health system, this research has historically been conducted with little or no consumer input into the research process itself. This is in opposition to the philosophical stance of the mental health consumer movement, which calls for inclusion in all levels of mental health treatment, including research. As members of research teams, consumers can help to ensure that research is sensitive to their needs, concerns, and desired outcomes. Several studies have proposed a continuum of roles for consumers in the research process. For example, Kaufmann offers a continuum of roles for consumers in research ranging from the traditional scientific model of research (whereby the subject is passive and not involved in the larger research issues of design and implementation) to the full inclusion of mental health consumers in the planning, implementation, and analysis of the studies.

METHODS: While studies have called for more consumer inclusion on research projects, no empirical evidence has been presented as to current levels of inclusion. 51 journals selected from the Social Sciences Citation Index for the publication years 2001-2002 were reviewed for any indication of service user inclusion, especially in the methodology sections of the published articles. Journals included in the sampling frame were those that publish empirical studies on mental health consumer services or service utilization. The following research questions were asked: Are consumers being included on research teams, and if so, in what roles are they included? RESULTS: Only 6% of the articles selected for this study (16 of 250) explicitly stated in the methodology section of the article that mental health consumers were involved at some level with the research project. IMPLICATIONS FOR MENTAL HEALTH RESEARCH: The conclusions of this small-scale study are that consumers are not widely included on mental health research teams. If future studies replicate these findings, the implications are then clear that research on such a highly personalized and unique phenomenon as severe mental illness is in dire need of more consumer input on research teams. Consumers have become increasingly involved in all other aspects of the mental health system, but it seems likely that they are still being systematically excluded from research on their own illnesses and their services. Giving consumers a voice in the research context is a first step toward a more sensitive set out outcomes and measurements for the field. Researchers can help this process both by including mental health consumers on their research teams and by explicitly identifying that they have done so in the methods sections of their research reports.