Inclusion of Mental Health Consumers on Research Teams

Mental health consumers have moved from being passive recipients of care to being involved in a range of active roles both within the mental health system and in consumer-run agencies (1). Although studies have examined consumer inclusion in the mental health system, they have historically been conducted with little or no consumer input into the research process (2).

This trend is in opposition to the philosophical stance of the mental health consumer movement, which calls for inclusion at 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 (3,4). Several studies have proposed a continuum of roles for consumers in the research process. For example, Kaufmann (2) offered several roles for consumers in research, ranging from the traditional scientific model of research in which the consumer is passive and not involved in the larger research issues of design and implementation to the full inclusion of mental health consumers in planning, implementing, and analyzing the studies. Particular emphasis is placed on consumer review, approval, and voice in the research process.

Although studies have called for more consumer inclusion on research projects, no empirical evidence has been presented about current levels of inclusion. Therefore, we examined mental health literature published in 2001 and 2002 and asked the following question: Are consumers being included on research teams?

All journals that make up the broad field of mental health in the annual Social Science Citation Index Journal Citation Report (JCR) were part of this study's sampling frame. After careful review, the JCR subdisciplines selected for this study were health policy and services; nursing; psychiatry; clinical psychology; multidisciplinary psychology; public, environmental, or occupational health; and social work.

Within these subcategories, the investigator determined whether the journals were appropriate for the study. Appropriate journals included applied mental health services research on populations with severe mental illness. For example, psychiatric journals that primarily report on neurobiological studies were excluded, because consumer involvement in these types of studies is not to be expected. Fifty-one journals were selected on the basis of these criteria; three journals were excluded because of lack of institutional access, leaving 48 journals for inclusion in the study.

Once the journals were selected, research assistants looked at randomly selected issues for the years 2001 and 2002. These years were selected as the most recent completed years at the time the study began in early 2003. Approximately one-quarter of all available issues for each journal were surveyed with a random selection process. After extensive training, the assistants determined how many studies included consumers and at what level consumers were included. The study excluded any articles that were not direct-service studies, such as conceptual studies, thought pieces, meta-analyses of previously published data, or editorials.

Consumer inclusion was operationalized as any study that mentions consumer involvement in the methods section. This involvement may consist of being given the results of the study, in development or administration of scales, as investigator, or in some other manner, based on the roles cited in the literature discussed above. The research assistants used a form developed by the primary investigator to rate the level of inclusion for each article in the journals.

Only 6 percent of the articles selected for our study (16 of 250) explicitly stated in the methods section that mental health consumers were involved at some level with the research project. A flaw of this study is the assumption that the methods section would state whether mental health consumers were included on the research team. A better method would be to directly contact the lead author of each report to determine whether consumers were included.

This small-scale study found 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 not being systematically included in research on their own illnesses and services for these illnesses. Giving consumers a voice in the research context is a first step toward a more sensitive set of outcome goals and measurements for the field (5). 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.