Principal Investigator: Amelia Greiner Safi

DESCRIPTION (provided by applicant): 

Although there are substantial racial disparities in gynecologic cancer incidence and outcomes, gynecologic cancers are understudied and Black experiences of them especially so. The disparities for several gynecologic cancers are increasing and not solely explained by differential access to care. There is limited research on the experiences of patients and what exists focuses usually on a single type of cancer or at a single stage in the process, i.e. diagnosis and clinical trial enrollment. Health care provider practices are among the factors that influence these disparities, including insufficient pain treatment, minimization of symptoms, not discussing cancer risk and not recommending patients for surgical intervention or clinical trials. Past curricula-based interventions have inconsistently included patient voice and input. In 2022, with a community partnership building grant from the Cornell Center for Health Equity, we formed BVOGUE (Black Voices about Gynecologic Cancers: Understanding Experiences) to center patients in the effort to identify interventions that address health disparities. BVOGUE is a collaboration among gynecologic cancer survivors, patient research advocates, clinical therapists, cancer support nonprofits, cancer care delivery researchers, gynecologic cancer quality improvement teams, designers, oncologists, public health and social work researchers and public health students. We have received an IRB exemption and have conducted 5 pilot focus groups with Black gynecologic cancer survivors. We now seek to 1) conduct focus groups with 50 more participants to include those who were diagnosed under 40 years old, who identify as LBGTQIA+ and/or who reside in states not represented in earlier focus groups, 2) build community partnerships to help us in building our team and in recruitment, 3) share our initial findings in teachback sessions with interviewed patients and our partners to solicit potential actionable interventions and 4) initiate discussions about potential interventions with cancer care providers focused on health equity. Our work aims to elicit not only a clearer understanding of patient and provider experience related to disparities in gynecologic cancer outcomes, but to identify possible areas for intervention to test in future research.