During the nomination process for the 2018 CIHR Gold Leaf Prize for Transformation in Patient Engagement, we were asked to reflect on how our work in CREST.BD aligns with the guiding principles of Canada’s ‘Strategy for Patient-Oriented Research’ (SPOR) Patient Engagement Framework. Specifically, we were asked – how in our day-to-day work do we actually foster inclusiveness, support, mutual respect and co-building of research activities? In this blog, we’ll briefly describe bipolar disorder and our CREST.BD network. Then we’ll talk about how our work embodies the guiding principles of the SPOR Patient Engagement Framework – on the ground.

What’s bipolar disorder?

Over half a million Canadians live with bipolar disorder (BD), a long-term and 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 medications. Psychological and social (‘psychosocial’) interventions, stigma-reduction and easy access to knowledge on effective self-care are critical.

What’s CREST.BD?

Our Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) was established in British Columbia in 2007. It’s now a national network, which 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.

“BD is one of the most complex mental health conditions we deal with. It’s a mood disorder that can play out in myriad, diverse ways, and people with BD are often highly stigmatized and marginalized. CBPR methods offer an ideal approach to working with communities who are traditionally disempowered or disenfranchised” [1]

How does CREST.BD’s work align with the SPOR Patient Engagement Framework?

Ensuring inclusivity

CREST.BD is organized around the principal of equal valuing of diverse expertise. The network is co-led by three individuals, one of whom, Steven Barnes, is a researcher and acclaimed teacher, but also an artist who lives well with BD. Beyond this leadership group, our network includes academic/patient/healthcare provider core members, trainees, knowledge users, contracted ‘peer researchers’ and a national Community Advisory Group. Almost all CREST.BD publications, grants and research projects directly involve (or are led by) people with BD.

“We have people who are academics who live with BD, clinicians who live with BD, and then there are people who come in purely from a lived-experience perspective… so even within that core group, there’s real diversity in the types of expertise they provide.” [2]

Supporting authentic engagement

Our Bipolar Youth Action Project provides one example of how we’ve empowered people with BD to engage in research. The project team included academic researchers, a community partner, and youth peer researchers. It explored strategies that youth use to stay well with BD, and the optimal ‘knowledge translation’ outputs for sharing these strategies. Importantly, it also built capacity for youth with BD to engage in research: training and mentorship in qualitative, arts-based and CBPR methods occurred throughout.

Financial compensation is one means to supporting authentic engagement. In the Bipolar Youth Action Project, we contracted the youth peer researchers and community partner lead throughout the 2-year project. The wider community of youth with BD who participated in the project’s research events were paid an honorarium and other financial barriers were mitigated (e.g., covering childcare/transportation, funding a partner/family member to attend events as a support). Flexibility and responsivity was seen as key to this process (e.g., finding a work-around if a peer researcher faces losing benefits if they earn too much from research engagement).

Fostering mutual respect and valuing diverse expertise

We’ve talked elsewhere about how mutual respect and valuing of diverse expertise can be fostered over time with the right people, supports and structures [5]. Key to this are our collectively identified core values [3]: impact, integration, innovation, diversity, equity and integrity. We find it most effective to bring diverse stakeholders together, e.g., our Community Advisory Group consists of both people with lived experience and healthcare providers. Our Community Engagement Days (described below) include diverse stakeholders, supporting co-learning and deconstruction of traditional barriers.

Co-building research and KT

“The first thing we did … was to sit down and hold a community engagement day with 50 or 60 people and say, ‘OK, where are the gaps? What needs to be addressed in BD research?’”  [1]

CREST.BD focuses on four research areas: 1. Quality of life; 2. Self-management; 3. Psychosocial interventions, and; 4. Stigma [3]. These priorities were determined by a foundational Community Engagement Day [6]. The events are a hybrid of community engagement (incorporating graphic facilitation) and research (qualitative and quantitative methods). We’ve refined and adapted our research foci on the basis of iterative engagement and have now delivered 11 national events on ehealth, self-management, quality of life, stigma, creativity, recovery and youth engagement. Looking ahead, our current applications for research funding have been crafted on the basis of gaps in knowledge identified during these events and community consultations.

Stay tuned for our next blog, which will feature videos sharing perspectives and lessons learned from our team’s researchers and peer researchers!

Publications – selection only
1. MSFHR. “Unique Network Uses CBPR to Study BD”. Retrieved from: https://www.msfhr.org/news/msfhr-news/unique-network-uses-community-based-participatory-research-study-bipolar-disorder

2. MSFHR. “Kaleidoscope. How the patient perspective is shaping health.” Spark. Spring, 2016. Retrieved from: https://www.msfhr.org/spark/04/

3. CREST.BD. “Our Strategic Directions 2014 to 2019”. https://www.crestbd.ca/research/our-strategic-directions/

4. CREST.BD Bipolar Blog. “Two Tips for Engaging People with Mental Illness in Research”. Last updated June 8th, 2016. https://www.crestbd.ca/2016/06/08/two-tips-engagement-mental-illness-research/

5. Michalak EE, Hole R, Maxwell V, Livingston J, Murray G, Parikh S, Lapsley S, McBride S and CREST.BD. (2012) Improving care and wellness in BD: Origins, evolution and future directions of a collaborative knowledge exchange network. International Journal of Mental Health Systems, 6:16. https://www.ncbi.nlm.nih.gov/pubmed/22963889

6. Michalak EE, Lane K, Barnes SJ, Khatri N, Hole R, Lapsley S, Maxwell V, Milev R, Parikh SV, Berk L, Berk M, Tse S, Murray G, Algorta GP, Lobban F, Jones S, Johnson SL. (2015) Towards a better future for Canadians with BD: Principles and implementation of a CBPR research model. Engaged Scholar, 1(1):132-147.

Erin Michalak

Erin Michalak is the founder of CREST.BD. She is also the Patient Engagement Methods Cluster lead at the BC SUPPORT Unit, one of 11 SUPPORT Units established across the country as part of Canada’s SPOR, led by the Canadian Institutes of Health Research (CIHR). You can learn more about how the BC SUPPORT Unit is helping to support, streamline and increase patient-oriented research throughout BC at https://bcsupportunit.ca/