Background: There are about 1 million sexual and gender minorities (SGMs) living with cancer in the United States today. There is evidence that SGM cancer disparities exist, yet little is known about SGM experiences across the cancer care continuum. This is particularly true for African-American SGMs, who may experience greater disadvantage and cancer burden due to the intersection of SGM identity and race. Cancer-related patient-centered outcomes research has the potential to more fully describe SGM experiences across the cancer care continuum and identify promising points of intervention.
Proposed Solution: Karmanos Cancer Institute/Wayne State University and Michigan State University will partner with LGBT Detroit, an African American-led grassroots organization, to expand Detroit HealthLink for Equity in Cancer Care. HealthLink is an ongoing PCORI-funded community engagement program to build public interest, involvement, and investment in cancer-related PCOR. Through HealthLink, SGM community stakeholders will be engaged and included in SGM Cancer Action Councils. An existing curriculum designed to engage communities in research will be delivered to council members in order to prepare them for future research collaborations.
Objectives: 1) Establish two SGM Cancer Action Councils with community stakeholder members. 2) Train 20 members using an existing curriculum to increase their capacity to serve as PCOR partners, with an emphasis on focus group methods. 3) Identify cancer-specific PCOR needs among racially and socioeconomically diverse SGM adults through focus groups. 4) Develop a report of cancer-specific research priorities generated by the SGM Cancer Action Councils and informed by the data collected. 5) Create a network of cancer researchers interested in SGM PCOR to whom these research priorities will be disseminated.
Activities: Phase 1: KCI, MSU, and LGBT Detroit will continue to assemble two SGM Cancer Action Councils. Phase 2: The project team will deliver HealthLink’s adaptation of the “Building Your Capacity” curriculum to both councils. Phase 3: The team will conduct focus groups to help the councils accurately characterize cancer care experiences in SGM communities. Phase 4: The councils will develop a report of PCOR priorities based on the data collected in Phase 3 and through group consensus. Phase 5: The project team will establish a new network of researchers who are already conducting research in SGM communities or are interested in doing so: the SGM Cancer Disparities Research Network. Council members will participate in the presentations to this group during which PCOR priorities will be discussed in depth.
Outcomes and Outputs: 1) The coordination of two SGM Cancer Action Councils: The project team will collaborate with council members in a process of evidence prioritization and offer training to prepare them to advocate for research investigations that address the most pressing cancer-related needs of the SGM community in metropolitan Detroit. 2) Knowledge discovery and focus group data: The collection of focus group data from diverse SGM survivors, caregivers, and other community members affected by cancer will address areas of the literature in which there is little data, especially on African-American SGM individuals. This data will also guide the councils’ prioritization of cancer-related PCOR questions. 3) Report of council-identified research needs and priorities: Council members will identify cancer-related needs and develop them as research questions as part of a PCOR agenda to be detailed in a report for broad dissemination. 4) The coordination of the SGM Cancer Disparities Research Workgroup: This workgroup will support ongoing exchange and collaboration between council community stakeholders and researchers.
Patient and Stakeholder Engagement Plan: Community stakeholders play key roles in the Advisory and Oversight Committee and the Cancer Action Councils, comprising the majority of these groups.
Project Collaborators: LGBT Detroit, an African American-led grassroots organization located in the city of Detroit. SAGE Metro Detroit (services and advocacy for LGBT elders) will serve as a consulting agency.
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Project Resource: Detroit Health Link Report