Grant: CIHR Gold Leaf Prize for Transformation: Patient Engagement

Over half a million Canadians live with bipolar disorder (BD), a long-term, potentially disabling mental health condition that causes extreme mood swings from depression to mania. Suicide rates are disturbingly high - up to 15% of people with BD will end their own lives. With optimal treatment, care and empowerment, people with BD can flourish, but this requires more than just medication. Psychological and social (‘psychosocial’) interventions, stigma-reduction and easy access to knowledge on effective self-care are critical. The Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) was established in 2007. Now a national network, it uses a pioneering participatory approach in which academics, healthcare providers and, critically, people with BD work together to conduct research. CREST.BD is unique in its use of Community-Based Participatory Research (CBPR) in BD; essentially, research done hand-in-hand with communities. It is co-led by three researchers, one of whom lives with BD, as do several founding members. They ensure inclusion, real engagement, respect and full participation in diverse ways. For example, they employ ‘peer researchers’ who live with BD, a Community Advisory Group and run regular community engagement events. Almost all CREST.BD publications, grants and research projects directly involve or are led by people with BD. CREST.BD has produced meaningful new knowledge in their research priority areas (selected by community): quality of life, stigma, psychosocial interventions and self-care. However, they also specialize in knowledge translation (KT) – moving research results into action. For example, they developed an effective theatrical performance (‘That’s Just Crazy Talk’) to reduce BD-stigma, and an online Bipolar Wellness Centre to empower people with BD to assess their quality of life and apply tailored self-care strategies. In sum, this unique network is shaping both science, and society, for Canadians living with BD.