Endometrial cancer (EC), a cancer of the lining of the uterine wall, is the fourth most common cancer among US women. Overall, EC has a good survival rate: over 80 percent at five years, but African-American women die at up to three times the rate of white women. This is one of the worst racial disparities in cancer in the United States. To address this, engagement with patients is critical. The Endometrial Cancer Action Network for African-Americans (ECANA) was created as the first platform for African-American women to have their voices, experiences, and research priorities heard. ECANA stakeholders have identified a major barrier to ECANA’s success: gaps in trust and knowledge between black women, EC researchers, and EC advocates
To address these gaps, the project team proposes ECANA’s first public, national conference: the ECANA Conference for Community, Education, and Research Training. The event’s objectives are to: address barriers identified for each stakeholder group in an in-person, facilitated format; provide meeting space for critical in-person relationship development; initiate patient-researcher partnerships from several regions of the country; and develop a high-quality patient-friendly report for mass dissemination.
The conference will be held at the Society of Gynecologic Oncology’s (SGO) 50th Annual Meeting on Women’s Cancer in March 2019. Collaborators and attendees will be black EC patients from around the country, EC researchers, reproductive health advocates, and national reproductive justice (RJ) leaders. The agenda will include EC education, community-building and wellness workshops for patients, PCOR and RJ trainings, presentations by EC researchers, and a partnership building session. Activities will be interactive and will provide tangible tools to sustain research partnerships. The team will disseminate a high-quality digital report of conference proceedings via ECANA’s website and social media, and the digital platforms of conference collaborators.
Outcomes of the ECANA conference will have significant impact for black women with EC and include:
- A national community of EC patient research advisors, who are black women
- Trained EC researchers in the key aspects of both patient-centered outcomes research (PCOR) and reproductive justice—a critical joint training to bridge the current barrier of mistrust among black women to reproductive health research
- Critical, in-person groundwork to build meaningful patient-research partnerships in EC around the country
- A public report on successful methods for aligning PCOR and reproductive justice, and building patient-researcher relationships in marginalized communities of women, which the project team will disseminate nationally
In addition to conference attendees, the team will bring together essential stakeholders, including a network of trusted clinicians who specialize in EC and serve many African-American women and ECANA’s steering group, which consists of Kemi Doll, MD, MSCR (project lead), a project manager, a project coordinator, three EC survivors, an advisor from a community organization for black women cancer survivors, advisors with expertise in patient-centered outcomes research, SGO leadership, and clinical OBGYN practice. The project team will recruit patient attendees through its networks and ECANA’s website. Collaboration with all stakeholders occurred throughout the development of the proposed project, and will continue throughout the project through monthly steering group meetings and ongoing conference session development.