"The wisdom that you’ve learned from what you’ve gone through is just as important as clinical or distanced research.”
The inclusion of lived experiences is crucial to well-informed health care and research. The participation of people with real-world knowledge gained from their experiences with mental health conditions drives the Heinz C. Prechter Bipolar Research Program and others like it. The Prechter Program studies individuals with bipolar disorder through the course of their lifetimes in the Longitudinal Study of Bipolar Disorder. With 18 years of data and over 1,500 research participants, the Prechter Program could not study bipolar disorder without the help of those participants — including Kiersten.
When asked about her motivation for getting involved with bipolar disorder research, Kiersten talks about her drive to help others. She recalls the mental health challenges she experienced while obtaining her master’s degree and wanting to pursue a Ph.D. program to conduct research. “I really wanted to get my Ph.D. and do research but I know that I can’t participate in research the way I want to,” Kiersten says. “So, if I can be a research participant, that’s still being involved.” Participating in research is a way that Kiersten can share her journey with others. “I want other people to know that they’re not alone, because that was something that helped me so much. Researchers might learn connections that they didn’t know about before that might help guide treatments.”
Kiersten fiercely defends the need for lived experiences to be central in mental health research. She is a social worker currently working in suicide prevention, with a focus on education and training, including dispelling myths that exist within the field of suicide prevention and research. She currently has a grant that requires her to plan and run an annual community-based event. Kiersten’s event in 2023 centered on how lived experience with suicide should influence suicide care. “Research is so often led by people with Ph.D.s — but who doesn’t have Ph.D.s? Poor people, and people whose mental health has tanked them so they couldn’t survive a Ph.D. program. There are so many reasons why the people doing the research are not the people who have lived experience. The wisdom that you’ve learned from what you’ve gone through is just as important as clinical or distanced research.”
The need is great for people who have lived experience when it comes to mental illness research. Research programs and studies across Michigan Medicine (umhealthresearch.org) are always seeking participants to help inform treatment and care.
Unsure about taking the dive into research participation? Kiersten offers some advice for the wary. First, she says, remember that participating in research is confidential and can’t impact insurance, a job, etc. Second, what you share while participating has an impact on the world’s understanding of bipolar disorder. Lastly, she emphasizes that everything you share has an impact on the lives of others and can give you a sense of meaning. “Yes, you are a data point, but every single point on that graph is a person. Within that data point is how you’ve survived, how you’ve found wellness, how you’re still going. You’re a data point in this average, but they couldn’t make that average without you.