Improving Community Engagement in Research
Summary
We are creating strategies that empower community members to engage in health research.
Timeline
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When I started my first faculty position at the University of Manitoba, I was eager to involve people with lived experience and community members in my research. Unsure where to begin—and nervous about getting it right—I hired my first co-op student, Celine, who conducted a comprehensive review of best practices to guide our approach.
During this process, I discovered the importance of offering clear, accessible resources—ensuring participants understand expectations and receive transparent compensation for their time, energy, and contributions. To achieve this dynamic within our research partnerships, we co-developed a series of resources with people with lived experience.
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One of our first major projects as a newly formed partnership examined how biological specimens are handled for research at CancerCare Manitoba. We assessed consent processes, regulatory frameworks, and best practices from other institutions and created a set of recommendations to make the process more patient-centred.
Recognizing the barriers to accessing precision oncology, our research team hosted a World Café to bring together key stakeholders. The goal was to identify research priorities that address gaps in awareness, fragmented expansion efforts, and systemic access challenges. This initiative marked a significant step toward ensuring more patients benefit from cutting-edge, personalized cancer treatments.
Active Projects
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Open Education Resource
We are creating a web-based open education resource that empowers community members to actively engage in health research by offering a clear, centralized hub of Manitoba-specific information about the basics of research.
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June 2025 Partnership Convening at the Winnipeg Art Gallery
We are collaboratively planning this event with scientists, patient partners, and community members to ensure a balanced and meaningful exchange of knowledge. From the outset, we have engaged individuals with lived experience to shape the agenda, ensuring their perspectives are central to the discussions.
Completed Projects
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Evaluating Spectrums and Surveys for Patient Engagement for Effective Collaboration
We’ve completed an in-depth review of patient engagement frameworks and surveys to help researchers collaborate more effectively with individuals who have firsthand healthcare experience. These frameworks vary in inclusivity, sustainability, and tools provided, so finding the right fit for each research team is essential.
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Co-Developing Policies and Procedures for Partners in Research
Working with people with lived experience and following best practices in patient engagement, we developed a suite of resources to help people with lived experience engage in our research.
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Improving Biological Specimen Handling for Precision Medicine at CancerCare Manitoba
As precision medicine gains momentum, human-derived biological specimens play a pivotal role in advancing genomic research, innovating treatments, and moving closer to a cure for cancer. This initiative examined the current processes at CancerCare Manitoba (CCMB) and proposed enhancements to speed up research, safeguard patient interests, and optimize treatment outcomes.
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Precision Oncology World Cafe
Precision oncology has the power to transform cancer care, but fragmented efforts and access barriers prevent many patients from benefiting. Lack of awareness and systemic hurdles mean better treatments often go unused, impacting health and society. To address these challenges, our research team hosted a World Café, engaging stakeholders to identify research priorities that improve access to precision oncology. This initiative aims to bridge gaps and ensure more patients receive the best possible care. Stay tuned for key insights and next steps.