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Dr. Joselle Cook is leading groundbreaking research into monoclonal gammopathy of undetermined significance (MGUS), a precursor condition to multiple myeloma. Her work is not only advancing scientific understanding but also reshaping how research engages with communities thanks to a powerful model of bidirectional learning.
A Research Focus Rooted in Community Need
Dr. Cook’s research began with a critical observation: a gap in data on the prevalence and patterns of monoclonal gammopathies within Minnesota’s large Eastern African community. Previous studies had shown that certain African populations are more likely to develop these conditions due to factors such genetic predisposition, yet local data was lacking.
To address this, Dr. Cook launched the MAGIC (MGUS/MM Awareness and Genetic Insights Campaign) study—an education-based screening initiative aimed at understanding how MGUS affects different groups. The study also promotes early detection, education, and ongoing monitoring for participants.
Enter the Community Engagement Studio
Through the Mayo Clinic Clinical Trialist Training Program, Dr. Cook was introduced to the Community Engagement Studio, a structured forum for gathering insights from patients, caregivers, and community leaders. This experience transformed her approach.
She realized that for research to be truly impactful, it must be shaped by the voices of those most affected. The Studio provided a framework to integrate lived experiences into the scientific design, making the research more relevant and responsive.
Community Feedback That Drives Change
The Studio’s influence on Dr. Cook’s work is clear. Participants expressed a strong desire to receive their results promptly, prompting the research team to prioritize rapid result sharing.
Education also emerged as a key theme. Community members wanted to understand MGUS and the purpose of the screening. In response, the team embedded educational components into their outreach efforts.
Another major shift came in how the condition was described. The term “cancer” was found to be alarming and confusing. Community members encouraged the team to use more culturally attuned language—describing MGUS as a “warning sign” rather than a diagnosis. This feedback reshaped how Dr. Cook communicates her work in both outreach and clinical settings.
A Feedback Loop That Works
Dr. Cook’s team meets regularly to review study progress and incorporate participant feedback. Coordinators play a vital role in gathering insights, especially from those visiting Mayo Clinic. Community partners are also involved in outreach, and post-event debriefs help refine strategies.
This approach ensures that feedback isn’t just collected—it drives changes in protocols, outreach methods, and how results are communicated.
Advice for Fellow Researchers
Dr. Cook encourages other researchers to engage with community input early—especially for prospective and epidemiologic studies. Waiting until a study is fully designed is often too late.
She also emphasizes humility. Researchers must be willing to listen and adapt, even if it means rethinking their “perfect” plans. Most importantly, she advocates treating community members as partners, recognizing their lived expertise and building systems that share credit and foster long-term engagement.
Get Involved
Whether you've experienced a diagnosis firsthand or supported someone through theirs, your insights matter.
You have the power to shape the future of health research by sharing your lived experience. Learn how you can get involved through our Community Engagement Studios—where your voice helps make research more relevant and impactful.
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