A couple of years ago, I came across a bipolar research organization, founded in 2007 and based in Vancouver, BC, called CREST.BD. Thanks to funding from the Canadian Institutes of Health Research (CIHR), part of Health Canada, the organization is poised to make a major dent in shaping where the field needs to move next.
This has to do with the efforts of its researcher-founders in engaging patients in the community. Erin Michalak, an Associate Professor in Psychiatry at the University of British Columbia, is the driving force behind CREST.BD. Funny story: When we first started exchanging emails, I happened to mention a certain study in which the researchers asked successful patients with bipolar what they did to get well and stay well.
Sadly, precious few researchers ever feel they have anything to learn from their patients. That’s why this study stood out. As far as I was aware, there was only one other like it. Was she aware of the study?
I’m sure my question had her rolling in the aisles. Although we were communicating by email, I can picture her struggling mightily to keep a straight face. With great restraint, she informed me she was the author of that study.
Dr. Michalak and her colleagues are not conducting research simply to rack up publishing credits. The emphasis is on “translational” research that is converting their findings into clinical, educational and real world change. For this to work, their research needs community participation, what is called community-based participatory research (CBPR). The approach is common enough in other areas of endeavor, but is virtually unheard of in psychiatry.
So, if you’re going to produce a short video on what we need to know about handling money when you live with complexities of bipolar, and think you can do it without any input from patients - well, how on earth is that going to be credible?
It just so happened CREST.BD did produce such a video. This is part of its educational mission, to enhance the wellness of individuals living with bipolar. Its website now has a wealth of information related to recovery and to coping with the day-to-day challenges of our illness.
Concerning the video in question, the piece offers this advice: “You can take measures to limit your risk while experiencing a mood episode by setting up safeguards when you’re emotionally well. For instance, you can talk with your bank about setting limits on your transactions.”
The video shows an actress picking up her phone and calling the bank. The actress has TV credentials, but she is also the well-known bipolar advocate and speaker, Victoria Maxwell. She is also a team member at CREST.BD. As she reports on the organization’s website:
I admit when I joined CREST.BD I was suspect. I’d seen it before: an individual with lived experience included on a board or committee but amounting to no more than window dressing and good optics for grant applications. There were a couple of us. So were we the two token ‘loonies’ (or ‘toonies’ so to speak)?
Trust me, a lot of us have been there. But Victoria tells a story of how she and other “experts by experience” have been sought out by CREST.BD. This includes co-authoring articles, writing chapters in academic texts, and acting as investigators and decision makers on research projects and grants.
This new form of engagement has been met with skepticism and disbelief in some circles. At a conference she attended in which the speaker related how patients were involved from start-to-finish on a research project, Victoria recalled overhearing behind her: “It’s just the new macrame.”
Winning hearts and minds hardly happens overnight. The physicist Max Planck once famously declared that science advances one funeral at a time. Dr. Michalak is rather more upbeat. You don't, after all, round up vital grant money simply by waiting for scientists to die.
Instead, she states there is evidence that this pioneering approach to research can result in tangible benefits - for both people with bipolar, and for science. People involved in CREST.BD’s research describe how it helps their recovery and empowerment, and reduces stigma. But there’s also evidence that the team’s approach to research improves the quality of the science itself. “Personally, I feel like we’re more at a point of rebirth, than a funeral” she says.
In fact, the roster of old-school researchers she has got on board is enviable. So much so that in June this year, she received validation in the form of the prestigious Mogens Schou Award for Public Service, presented by the International Society for Bipolar Disorders.
The ISBD comprises the world's leading bipolar researchers. Hopefully, Dr. Michalak's award is a harbinger of scientific advances to come, no funerals.
CREST.BD's website contains a wealth of useful information for patients and loved ones. Key links:
Bipolar Wellness Centre
Quality of Life Areas