Harnessing the potential of community based participatory research approaches in bipolar disorder

Michalak, Erin Elwood and Jones, Steven Huntley and Lobban, Anne Fiona and Perez Algorta, Guillermo Daniel and Barnes, Steven J. and Berk, Lesley and Berk, Michael and Hole, Rachelle and Lapsley, Sara and Maxwell, Victoria and Milev, Roumen and McManamy, John and Murray, Greg and Tohen, Mauricio and Tse, Samson and Sanchez de Carmona, Manuel and Johnson, Sheri L. (2016) Harnessing the potential of community based participatory research approaches in bipolar disorder. International Journal of Bipolar Disorders, 4 (4). ISSN 2194-7511

Abstract

Background Despite the rapid growth in the sophistication of research on bipolar disorder (BD), the field faces challenges in improving quality of life (QoL) and symptom outcomes, adapting treatments for marginalized communities, and disseminating research insights into real-world practice. Community-based participatory research (CBPR)—research that is conducted as a partnership between researchers and community members—has helped address similar gaps in other health conditions. This paper aims to improve awareness of the potential benefits of CBPR in BD research. Methods This paper is a product of the International Society for Bipolar Disorders (ISBD) Taskforce on Community Engagement which includes academic researchers, healthcare providers, people with lived experience of BD, and stakeholders from BD community agencies. Illustrative examples of CBPR in action are provided from two established centres that specialize in community engagement in BD research: the Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) in Canada, and the Spectrum Centre for Mental Health Research in the United Kingdom. Results and discussion We describe the philosophy of CBPR and then introduce four core research areas the BD community has prioritized for research: new treatment approaches, more comprehensive outcome assessments, tackling stigma, and enhanced understanding of positive outcomes. We then describe ways in which CBPR is ideal for advancing each of these research areas and provide specific examples of ways that CBPR has already been successfully applied in these areas. We end by noting potential challenges and mitigation strategies in the application of CBPR in BD research. Conclusions We believe that CBPR approaches have significant potential value for the BD research community. The observations and concerns of people with BD, their family members, and supports clearly represent a rich source of information. CBPR approaches provide a collaborative, equitable, empowering orientation to research that builds on the diversity of strengths amongst community stakeholders. Despite the potential merits of this approach, CBPR is as yet not widely used in the BD research field, representing a missed opportunity.