When I first heard about peer research a few years ago, I knew I wanted to be involved. Peer research involves people with lived experience working in partnership with a research team. What drew me to CREST.BD’s approach is that people with bipolar disorder inform the research priorities and outputs rather than being the subjects of research.
In my job as a medical librarian, I’m immersed in academic writing on health topics and I see what gets published on bipolar disorder. It can be really disheartening at times. CREST.BD’s network lead, Dr. Erin Michalak talks, about the “misery statistics” on bipolar disorder (which I generally try to avoid reading). So it’s pretty cool to be on the other side of research — not as the patient or research subject but as someone who has a voice and something valuable to contribute. The other thing that is really great about CREST.BD is that the team comes from a positive psychology perspective. They recognize that bipolar disorder can be managed, that things can get better, and a good life is possible.
CREST.BD’s Bipolar Wellness Centre website has been undergoing an update and refresh over the past few months. The team members reviewed resources and tools such as apps, websites, books, articles, and videos that would help people with bipolar disorder. The resources are organized according to the different domains of the Quality of Life Tool for Bipolar Disorder, such as physical health, mood, social support, self-esteem, and identity. My role in this project is to help identify relevant new evidence to add to the Wellness Centre. I searched databases like PubMed, PsycINFO, and Scopus for recent peer-reviewed, evidence-based articles or systematic reviews that were specific to bipolar disorder and quality of life. I read the abstracts and — in many cases — the full articles to check for quality and relevancy. Once I had located some solid articles, I added them to a shared spreadsheet on Google Docs for the other team members to review. I also kept an online library of the articles through Mendeley, where I could sort the articles by topic and keep track of what I had already checked.
There are a lot more articles on the clinical and neurological aspects of bipolar disorder than the quality of life aspects, which is disappointing since there are so many psychosocial aspects to this disorder. For me personally, questions of identity, work, stigma, and coping strategies are more important than the genetics and biomarkers of bipolar disorder, for example. One of the more frustrating articles we came across was a very comprehensive systematic review of mobile apps for bipolar disorder that neglected to provide the researchers’ ratings of the specific apps. We did find some relevant articles that will be added to the CREST.BD evidence library that will be of interest to people with bipolar disorder, their friends and families, and their health care providers. It’s been wonderful to be part of this team. A good evidence review involves continuous monitoring, so if you have any recommendations for resources to add, please let us know…
Carolyn Ziegler joined CREST.BD in the summer of 2015. She works as an information specialist in the Health Sciences Library at St. Michael’s Hospital, Toronto. She lives well with bipolar disorder.