In 2018, the Milken Institute Center for Strategic Philanthropy (CSP) and the Depression and Bipolar Support Alliance (DBSA) collaborated to develop a first of its kind community survey. The goal was to learn about the experiences of people living with depression and/or bipolar and ultimately to use this insight to guide research prioritization and drug development efforts. The national survey garnered 6,405 responses from people living with depression and bipolar or providing care to someone with one of these conditions.

Respondents reported how they experience depression and/or bipolar, when their symptoms began, and how those symptoms impact their ability to function in daily life. In addition, they provided key insights into the research they believe would significantly affect their lives. Overall, the survey informed understanding of how the community experiences these conditions, as well as highlighted significant treatment gaps and research priorities.

Research priorities were clearly focused on improving treatments, developing precision medicine approaches, and increasing understanding of the underlying physiological differences. Finally, respondents overwhelmingly expressed a desire for an improved ability to function in daily life as a measure of wellness. Overall, this survey reveals the need not only for research to create better paradigms for treatment, but also for efforts to improve current treatment methods, such as better collaboration among practitioners to improve patients’ overall health.

Beyond identifying immediate research priorities for the field, this work also highlights the value of input from people with lived experience, which is often missed in traditional methods of study. The Milken Institute and the Depression and Bipolar Support Alliance will continue to use these insights as they work to guide research, programs, and funding within the mental health community.