Scope for research : study of consumer priorities for research on depression and bipolar disorder in Australia

Abstract

There is growing acceptance of the importance of the consumer viewpoint in mental health research. Previous studies have identified differences in research priorities for researchers and mental health consumers in Australia defined broadly (e.g., Jorm, Griffiths, Christensen & Medway, 2002a). However, little is known about the research priorities of consumers with specific mental health conditions. The aim of the SCOPE for Research project was to inform future directions for research on depression and bipolar disorder in Australia. This was achieved through the qualitative and quantitative exploration of consumer priorities and a comparison of these priorities with published Australian research. Phase 1 comprised focus groups with consumers and individual telephone interviews with consumer advocates. Participants were asked to discuss topics, groups and settings they believed were priorities for depression or bipolar disorder research. They were also asked to describe the factors that influenced their priority-setting and to identify their sources of information on mental health research. A qualitative analysis was conducted to identify major themes and construct a survey for the second phase of the project. In Phase 2, participants were asked to rate the importance of each topic, group or setting on a 5-point scale. Phase 3 of the project consisted of a thematic analysis of Australian published research on depression and bipolar disorder from 1997-2006 and comparison of the consumer survey results with published research. The most frequently cited themes in Phase 1 included the need for research on medication, and lifestyle and psychosocial influences on depression and bipolar disorder. Participants expressed reluctance to prioritise particular subpopulation groups and favoured community-wide research in community settings. They cited personal experience as the strongest influence on their priority-setting and most commonly sourced their information on depression and bipolar disorder research from the Internet. In Phase 2, participants rated research into the topic areas management and treatment as the top priorities. The highest rated target groups for research focused on people most at risk and Phase 2 participants prioritised research conducted in outpatient health settings such as community mental health services. As in Phase 1, the majority of participants were influenced by their own personal experience when setting priorities. The most common sources of information were mental health organisations and the Internet. Most published research identified in Phase 3 concerned lifestyle and psychosocial influences, causes, and description & characteristics of depression and bipolar disorder. Many studies targeted groups based on age and research was primarily conducted in the community. The comparison of the results of the Phase 2 consumer survey with the Phase 3 literature survey revealed more differences than similarities between the priorities of consumers and the current research output. This project represents an important contribution to the process of actively involving consumers in mental health research in Australia. It provides insight into the areas of most concern to the people who are the ultimate beneficiaries of research, the mental health consumers, and the findings can be used as a guide to ensure relevant research