Background: While Detroit is home to Karmanos Cancer Institute (KCI), and host to basic science, clinical, and population-based research programs, many non-research community stakeholders are largely unrepresented in the design and translation of research directly benefiting cancer patients/survivors, their families and caregivers, and non-oncology healthcare providers.
Proposed solution: KCI (academically affiliated with Wayne State University) will implement the HealthLink community engagement model to build public interest, involvement, and investment in cancer-related PCOR. Through the HealthLink model, community stakeholders will be engaged and included in one of three Cancer Action Councils. An existing curriculum designed to engage communities in research will be adapted and delivered to community stakeholders who are part of these Cancer Action Councils.
Objectives: Aim 1: Increase capacity among community stakeholders—including cancer survivors, their caregivers, advocates, and non-research organizations serving these individuals—to engage as partners of PCOR in metro Detroit. Aim 2: Build trusting, collaborative, and mutually beneficial relationships between community stakeholders and cancer researchers. Aim 3: Identify cancer-specific PCOR priorities based on community stakeholder input.
Activities: The project will have five phases. Phase 1: Enlist the expertise of an academic-community advisory group to revise the Tufts Clinical and Translational Science Institute curriculum, “Building Your Capacity (BYC): Advancing Research through Community Engagement” and tailor it to address cancer-specific PCOR. Phase 2: HealthLink will work with council members to develop community cancer profiles and identify critical needs along the cancer care continuum. Phase 3: Deliver the revised BYC curriculum to offer practical training in PCOR principles and skills to council members. Phase 4: Coordinate dialogues between councils and KCI researchers through a Research Action Program. Phase 5: Produce a final report that details community-identified research priorities and potential pathways to realizing such research.
Outcomes and outputs: 1) Revise an existing research capacity curriculum and tailor it to focus more explicitly on PCOR. 2) Create sustainable teams of stakeholders through Cancer Action Councils, and train council members so that they are prepared to advocate for research investigations that address the most pressing needs of cancer patients/survivors and their networks. 3) Create a system to support ongoing exchange and collaboration between stakeholders and researchers. 4) Council members will review the cancer-related needs they identified as most critical in the beginning of the project and expand them as part of a PCOR agenda to be detailed in a report for broad dissemination.
Patient and stakeholder engagement plan: Community stakeholders play key roles in the Advisory and Oversight Committee (AOC) and make up the majority of this group.
Project collaborators: Voices of Detroit Initiative (VODI) has been a healthcare leader and advocate for the uninsured and underserved community in the greater metropolitan Detroit area. VODI has partnered with KCI to introduce the HealthLink model to the area.