A bidirectional partnership between researchers and community members

What does data-driven community engagement mean? And what does its implementation look like in Washington state? This term ‘data-driven community engagement’ characterizes the Office of Community Outreach & Engagement’s (OCOE) approach to fostering a bidirectional partnership between researchers and community members. This method allows research to focus on areas of need within the community for which care is provided and use patient data and community input to see what cancer prevention and control strategies are working well and what needs further improvement. Dr. Jason Mendoza, the Associate Director of Community Outreach and Engagement and Associate Program Head of the Cancer Prevention Program at Fred Hutchinson Cancer Center, received funding from the National Institutes of Health (NIH) to develop a data-driven community engagement plan. This plan was designed to characterize the burden of cancer in Washington state, identify health disparities, and inform resource allocation for need-focused areas of research. The development of this strategy and execution is detailed in a recent publication in the journal of Preventive Oncology & Epidemiology.

“Data-driven community engagement is exciting because it involves collaboration across communities in Washington State and Cancer Consortium investigators,” shared Dr. Jean McDougall, a staff scientist in the Office of Community Outreach and Engagement housed at Fred Hutchinson Cancer Center. “We are using quantitative and qualitative data to identify geographic areas and populations that experience a disproportionate burden of cancer, amplify community voices, and direct resources and research to accelerate health equity.” The Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium was established in 2002 to center these three research institutes on a common goal of treating cancer in a collaborative environment. The Consortium initially focused its catchment area—a designated geographic area served by a NCI-funded research center in which the research, community engagement and outreach services focus on the needs of the region—on 13 counties in Western Washington. In 2022, the catchment area changed to include the whole state (39 counties in total). These efforts led by Dr. Mendoza are expanding data-driven community engagement centered on equitable cancer-related research and healthcare.

The Cancer Consortium has taken a thoughtful and methodical approach to serve all Washington state counties. These steps include an examination of where patients and research infrastructure reside within each county followed by the characterization and comparison of the demographics in each county or local region. Complementary to this information, this group has also sought to better understand community priorities and barriers to engagement with community members. The final step in this process has been to seek feedback and support from advisors from the Community Action, Community Outreach and Engagement, and Consortium boards.

These endeavors by the Cancer Consortium provided valuable insight into health disparities present in the counties beyond the original 13 county catchment area. First, this work supported the need for expanding the catchment area to all 39 counties. Demographic data from the additional counties revealed a higher percentage of Hispanic or Latino people and Indigenous Tribes and Indigenous populations than the original 13 counties supported by the Consortium. Several of these newly supported counties have 50-70% Hispanic or Latino residents, supporting the need for bilingual, culturally concordant community health educators working in communities in Central and Eastern Washington.

Next, identifying community priorities and barriers to engagement shed light on key, actionable issues that require support. Interviews from community members highlighted an interest in knowing the local cancer burden for their county and having metrics to determine the success of outreach programs within their county. Additionally, having a dedicated, bilingual coordinator was emphasized as a need to support successful data-driven community engagement. To provide support in these areas, catchment area data was reviewed and shared with communities through the catchment area data tool, Cancer In Focus^TM Washington, available on the Fred Hutch website.

To support efforts to address cancer-related healthcare disparities, the Cancer Consortium has used this information and additional discussions with advisory board members (including members from Community Action, Community Outreach and Engagement, and Consortium boards) to implement plans that increase the number of Community Health Educators, support two satellite Offices of Community Outreach and Engagement in Sunnyside and Spokane, and form the Indigenous Cancer Health Equity Initiative specifically for strengthening relationships with tribal communities. Additionally, grants funded by the Cancer Consortium—awarded to Fred Hutch, University of Washington or Seattle Children’s researchers—encourage proposals that focus on priority cancer types and populations to raise awareness of these disparities and mitigate them by increasing research growth in these areas. Together, the Cancer Consortium is using data in partnership with communities across the state to advance health equity in cancer research and care in Washington.

The spotlighted research was funded by the National Institutes of Health.

Fred Hutch/University of Washington/Seattle Children's Cancer Consortium members Drs. Allison Cole, Peggy Hannon, Vida Henderson, Myra Parker, Stephen Schwartz, and Jason Mendoza contributed to this work.

McDougall JA, Briant KJ, Carosso E, Cole AM, Dee C, Doody DR, Hannon PA, Henderson V, Johnson S, Parker M, Schwartz SM, Mendoza JA. 2024. Data-Driven Community Engagement: Using Quantitative and Qualitative Data to Set Priorities and Launch New Initiatives in a Growing Catchment Area. Prev Oncol Epidemiol. 2(1):2382286.