Improving care and wellness in bipolar disorder: origins, evolution and future directions of a collaborative knowledge exchange network

Abstract

The Collaborative RESearch team to study psychosocial factors in bipolar disorder (CREST.BD) is a multidisciplinary, cross-sectoral network dedicated to both fundamental research and knowledge exchange on bipolar disorder (BD). The core mission of the network is to advance the science and understanding of psychological and social issues associated with BD, improve the care and wellness of people living with BD, and strengthen services and supports for these individuals. CREST.BD bridges traditional and newer research approaches, particularly embracing community-based participatory research (CBPR) methods. Membership of CREST is broad, including academic researchers, people with BD, their family members and supports, and a variety of health care providers. Here, we describe the origins, evolution, approach to planning and evaluation and future vision for our network within the landscape of CBPR and integrated knowledge translation (KT), and explore the keys and challenges to success we have encountered working within this framework.

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

“…In the UK, service users have encouraged the development of BD research on recovery, anxiety treatment, and risk factors for suicide (Clements et al 2013 ; Jones et al 2012 , 2013a , 2013b ). In Canada, research on self-management, stigma, QoL, and psychosocial treatment has been prioritized by CBPR initiatives (Michalak et al 2012 ).…”

“…With a strong influence from disease models, symptoms have long been a primary outcome measure within BD research. People with lived experience, however, may weigh other outcomes as more important than symptom reduction, such as subjective experiences, QoL (Michalak et al 2006 , 2012 ; Murray and Michalak 2012 ), or recovery (Tse et al 2014 ; Jones et al 2015 ).…”

“…We draw on the experiences of two well-established centres for CBPR in BD to provide illustrative examples. The CREST.BD group in Canada (Michalak et al 2012 , 2015 ) and the Spectrum Centre in the UK are BD specialty centres grounded in community engagement. Both groups routinely involve community members at all phases of the research design, including as grant co-applicants.…”

Optimizing delivery of recovery‐oriented online self‐management strategies for bipolar disorder: a review

“…Not only is recovery a complex construct, but some of its implications appear to be at odds with traditional positivist approaches to psychopathology research. For example, the recovery focus on empowerment encourages active consumer involvement in all stages of research [for a comprehensive example, see ], recognizing that consumers, clinicians and researchers may have different priorities around measurement, design and research goals [see also ]. Furthermore, when recovery is viewed as a personal process, standardized objective outcome measures may need to be augmented with more ideographic and patient‐reported measures, which is now a burgeoning area of research [see discussion of QoL above, and also ].…”

A research agenda for bipolar disorder developed from a patients’ perspective

“…Globally, bipolar disorder is ranked sixth among the causes of Disability-Adjusted Life Years (DALY) between the ages of 15 to 44 years, is an important cause of a decline in the health-related quality of life (IsHak et al, 2012), and is associated with a high burden of social and occupational stress (Pini et al, 2005;Renes et al, 2014). Furthermore, it is a serious public health concern, as bipolar disorder often leads to hospitalization and therefore to high healthcare expenditure (Michalak et al, 2012). To limit these adverse consequences, timely diagnosis and adequate treatment are essential.…”