Session : Engagement of communities, civil society and patients as research partners
Chemo at the Edge of the World: Haida Style Engagement Shaping Public Health Action in Rural, Remote, and Indigenous Cancer Care
BELLIS D. 1
1 Haida Gwaii, Masset, Canada
Background
“Why is there no effort to learn about rural circumstances by the powers that be?”
~Haida Citizen, Old Massett Community Reporting Out
This question shaped how this project understands the relationship between knowledge translation and public health action. It moves the focus beyond underrepresentation to how rural and Indigenous knowledge is collaboratively generated to inform research, service design, and delivery in public health.
Drawing on Haida engagement practices from Haida Gwaii, a remote archipelago off the northwest coast of Canada, knowledge translation becomes a collaborative process that builds system-wide capacity while strengthening cancer care for the communities it is meant to serve.
Objectives
This project centres Haida engagement practices to support public health knowledge translation and action by:
increasing understanding of rural, remote, and Haida cancer realities across cancer research and care;
generating interesting and actionable questions to inform cancer research, service delivery, and cross-sector collaboration; and
building cross-sector capacity so learning shapes future knowledge development, interpretation, and use in system design and implementation.
Methods
This project is a visual storytelling–based, mixed-methods initiative grounded in lived caregiving experience on Haida Gwaii. The project is grounded in Haida values and ethics and informed by the Haida Health Services Model of Service Delivery. Engagements are designed through Haida community engagement practices and include visual storytelling and presentation, open discussion, and a voluntary and confidential survey. These engagements translate health knowledge into action through dialogue, capacity building, and participant-identified questions and next steps.
Following Haida engagement ethics, participation in the survey is recognized as work through entry into a draw for a custom-carved Pacific yew wood cutting board featuring a Lady on the Moon Haida design. Yew wood is a traditional Haida medicine and a source of chemotherapy, bringing together Haida knowledge, cancer research, and treatment through art.
Engagements have taken place at an international cancer research meeting and through community reporting out in Old Massett, with future engagements planned.
Results
Results to date demonstrate strong engagement, measurable learning, and capacity building that supports action.
Quantitative analysis showed a 31% increase in self-reported participant knowledge. Seventy percent of respondents indicated interest in continued learning or involvement related to rural, remote, and Indigenous cancer care.
Qualitative findings showed participants generated their own interesting field specific questions, next steps, and posed questions for others across cancer research and care. Thematic analysis identified recurring areas of focus, including equity, access, early diagnostics, and data. Interpretation and application of these themes varied by respondent and setting. As additional engagements are completed, results will continue to be updated.
Conclusions
Shifting how communities and systems learn from one another strengthens cancer care delivery. In this project, Haida community engagements functions as a public health intervention, producing measurable learning while building capacity and supporting cross-sector exploration and action. Reciprocity and community accountability are centred, growing non-extractive engagement practices.
Haida Gwaii’s rural and remote context offers community insights with Indigenous parallels that may inform how public health knowledge translation is approached in other settings.