Collaborators in care: Empowering people with bipolar disorder flourish through digital self-care tools
Trigger warning: This story discusses topics that may be disturbing for some readers, including suicide, depression, and mental illness. If you or someone you know is experiencing mental health challenges or is in crisis, contact the Canada Suicide Prevention Service at 1-833-456-4566 or explore these resources.
We all have good days and bad days – that's part of what makes us human. But for people living with bipolar disorder, good and bad days are often far more severe and can have a significant impact on daily life.
Characterized by repeated episodes of depression and over-elated mood (known as mania or hypomania), bipolar disorder affects over half a million people in Canada. Without proper care, statistics show that up to 15% of them will end their own life. However, as is the case with all mental health conditions, people living with bipolar disorder are not defined by their condition. With the right types of support, they can flourish.
"There is still tremendous stigma surrounding bipolar disorder, so what many people don't realize is that people with this condition can – and do – experience good health and live a happy, fulfilling life," says Dr. Erin Michalak, a professor of psychiatry at the University of British Columbia. "But this requires more than just medication – they need social support and empowerment."
This is where Dr. Michalak's research is making a difference. As a lead researcher of the Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (known as CREST.BD for short), she partners with cross-disciplinary researchers, health care providers, community organizations, and people living with bipolar disorder to develop practical tools and resources to help.
"It's critical to make sure that people with bipolar disorder have access to personalized, user-friendly and evidence-based information to support them, particularly because this condition can impact so many facets of their life," Dr. Michalak stresses. "Through our research, my team and I aim to provide that support by creating tools that empower people with bipolar disorder to make positive changes in their daily lives, which will then lead to better health and quality of life."
Learning from lived experiences
When the CREST.BD network was originally formed in 2005, improving the health and wellbeing of people with bipolar disorder was one of the network's two main goals. The second goal? Create a new, collaborative way of doing research by working hand-in-hand with these individuals. Nearly two decades later, this community-based, patient-centred research approach still forms the foundation of Dr. Michalak's work.
"The quality and impact of the research is so much better when you include diverse community members and stakeholders in the research process," she says, "and it's essential to meet the needs of the people we want to help. That's why almost all of our publications and projects involve people who live with bipolar disorder."
For example, one of the network's largest research aims has been focused on understanding the types of 'self-management' strategies – that is, things people do for themselves to cope with or improve their health condition – that are most effective for people with bipolar disorder. It's an aspect of Dr. Michalak's work that relies heavily on the participation and input of those with lived experience.
"People who have lived with bipolar disorder for many years often generate their own expertise around how to live a healthy, fulfilled life using different self-management strategies," she says. "By working with them, my team and I can learn about their experiences, get a better understanding of which strategies are most effective and why, and share this expertise with others. While our work will not replace the need for medication and formal therapies, we strive to create evidence-based tools that can help our patient partners and the many, many people around the world just like them."
Empowering people through technology
The development of such high quality, evidence-based tools has been a long journey for Dr. Michalak and her team, but well worth it.
For example, in 2005 the CREST.BD team began a multi-year research project to develop a first-of-its-kind questionnaire to measure quality of life in people with bipolar disorder. After years of research and collaboration with experts, clinicians, and people with lived experience – coupled with sustained government funding – the team launched the CREST.BD Quality of Life Tool in 2015. It quickly became one of the network's flagship digital tools to empower people living with bipolar disorder to manage and improve their health and wellbeing.
"Understanding your strengths and areas that you might want to improve upon is important to make sure you're using the right self-management strategies," Dr. Michalak says. "With this tool, we wanted to give users an easy way to measure their quality of life so they could understand where they are flourishing and where they need to focus more of their self-management efforts. Then, once they know where they want to make improvements, they can use our Bipolar Wellness Centre to support that journey."
The Bipolar Wellness Centre, one of the network's other flagship resources, was designed to be a centralized, one-stop-shop where Canadians can access everything they need to know about self-managing bipolar disorder to improve their quality of life. With a user-friendly website and colourful interface, it has become a go-to resource for patients, health care providers, and supporters.
"We have always been determined to provide information that meets people's needs," explains Dr. Michalak, noting that the Centre includes resources to cover relationships, sleep, mood, work, self-esteem and more. "And that's the beauty of these patient and community engagement approaches to research and tool development: the relationships we've fostered mean that people trust us enough to tell us what they need, and they're willing to work with us to address that need. Then – and this is just as important – they can help us get these tools out to the world to support other people with bipolar disorder more effectively."
Increasing access and personalizing care
Building on the success of the Quality of Life Tool and the Bipolar Wellness Centre, Dr. Michalak and her team are now taking their research one step further.
The team has created a smartphone-based app called the PolarUs app, which will make it even easier for people to access the information and help they need. And, thanks to advancements in artificial intelligence and machine learning, the app will, over time, even have the ability to suggest personalized self-management strategies for users, depending on their unique needs and situation.
"Imagine a 17-year-old living in a remote community in Canada is diagnosed with bipolar disorder and they don't know where to turn for information or help," she explains. "That person could login to the PolarUs app, create their personalized profile, and complete a detailed self-assessment of their quality of life. Then, they could select the areas of their life that they would like to focus and improve on, and access carefully curated scientific evidence about that life area, as well as practical strategies and tools to implement."
In combination with face-to-face therapies and treatments, Dr. Michalak believes the PolarUs app will offer a unique and powerful additional tool for patients to add to their self-care toolbox.
"Ultimately, we want people with bipolar disorder to know that they can thrive and experience good health and quality of life," she says. "With the work we're doing and these tools we're developing, we hope to make that easier for them to achieve."
Dr. Erin Michalak is the 2018 winner of the CIHR Gold Leaf Prize for Transformation: Patient Engagement for her work with communities and people with bipolar disorder across Canada.
The initial funding for the CREST.BD network began in 2005 with a grant from the Michael Smith Foundation for Health Research (now known as Michael Smith Health Research BC). A Network Catalyst Grant from CIHR in 2010 helped them grow from being a provincially-focused team to a Canada-wide network. A decade later, with sustained research funding (including additional grants from CIHR), CREST.BD operates as an international research network that helps improve the quality of live for people with bipolar disorder around the world.
Since being funded by CIHR, the PolarUs project has also received substantial philanthropic support from the Daymark Foundation, who are supporting a parallel stream of work to accelerate the development of an advanced version of the app for full public release. The project has also received philanthropic support from the Laurel Foundation.
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