So, you likely don’t need me to tell you that self-management strategies (the things that people do for themselves in order to cope with a health condition, or improve their health) are important for living well with bipolar disorder. There’s been lots of research into self-management strategies for conditions like diabetes, and heart disease, so there’s bound to have been lots in the bipolar disorders research field too, right?

Well, actually, not so much. When we first began to research self-management or “wellness” strategies for bipolar disorder back in 2007, there had in fact been just one previous Australian study published on the topic. The short book resulting from that project still makes for a great read for people facing bipolar disorder.

We figured, however, that we should also do some work in Canada on this topic, so we brought together a group of local researchers based at the University of British Columbia (one of whom was core team member Sara Lapsley, who lives with bipolar disorder herself) to conduct a complementary study in a Canadian sample. In the project, we asked 32 people with bipolar disorder (in a series of one-on-one interviews or focus groups) what worked for them in terms of living well with the condition. They told us that, in their experience, there are 6 main approaches to managing bipolar disorder:

The project produced some really compelling results, and laid the foundations for a whole program of CREST.BD research into effective self-management strategies for bipolar disorder. But it had some limitations. First of all, although a sample of 32 people is pretty big for a qualitative research project, nobody’s going to argue that qualitative methods are designed to capture the full range of experience in bipolar disorder. On top of this, although many of the people in our research described having a quite severe histories (e.g., on average, people in the study had been hospitalized for their condition 3 times over their lifetime), the sample was skewed in other ways: Two thirds of them were women, most of them were Caucasian, over half were employed and most lived in British Columbia’s main urban centres.  We knew then, and know now, that the results from this study wouldn’t be generalizable to the diverse population of people living with bipolar disorder in Canada, or even across a region like Metro Vancouver. The range of appropriate and successful self-management strategies will differ based on the intersection of many factors including age, socio-economic status, gender, geography, ethnicity, and religious and cultural practices. Further research needed to be done to identify and categorize the full range of strategies being employed successfully by the diverse population across Canada, and internationally. Clearly, we also needed to use different research methods in order to be able to make more generalizable claims – a perfect task for the ‘Delphi Consensus Consultation‘ approach.

Delphi methods are, from my perspective, one way of re-distributing power in the research process. Bipolar disorder research has historically occurred within the context of a pretty traditional research environment; that is, one in which scientific and academic expertise is prioritized over the “lived experience” expertise gained by people dealing with the condition on a day-to-day basis.  And by this I’m not just referring to the privileging of scientific expertise over that of people living with bipolar disorder. I’m also arguing that we value knowledge gathered by more traditional scientific routes over that gained by front-line healthcare workers and healthcare providers who support patients with bipolar disorder.

Let me be clear: I’m not arguing that “lived experience” or clinician knowledge is more important than knowledge gathered via traditional academic methods. What I’m arguing instead is that each is valuable; that there are different kinds of “science” and different kinds of expertise. We need to do a better job of involving people with diverse kinds of expertise in bipolar disorders research, and that we should be sourcing knowledge from the varied communication platforms used by these experts – blogs, books, scientific journals, etc. Delphi consultation methods do just this, treating scientific, clinical, and lived experience expertise equally.