COllaboration for EQuity in Uterine Leiomyomas - PROJECT SUMMARY - OVERALL COEQUaL, the COllaboration for EQuity in Uterine Leiomyomas, builds on longstanding collaborations among women with uterine fibroids (UF) and multidisciplinary researchers at Mayo Clinic, Fibroid Foundation, University of Mississippi Medical Center and University of Florida, Jacksonville to place the woman with UF at the center of this project with the overarching goals to improve outcomes for all women with UF and eliminate health disparities for Black/African American (BAA) women. Our prior research demonstrates that most women and significantly more BAA women prioritize uterine sparing treatments, yet hysterectomy continues to dominate UF care. Thus, this proposal aims to identify affected women earlier, understand and meet their needs, delineate internal and external barriers to care, optimize communication between women and a variety of health care providers, and use innovative tools to eliminate barriers to individualized care. Our longstanding collaboration has pioneered the study of health disparities and UF for over two decades. Our collaboration with the Fibroid Foundation, the leading UF patient advocacy organization, began at its founding in 2012 and has been present in the conception and design of this proposal. Three projects are proposed: 1) Targeted Awareness and Education on Options in Uterine Fibroids 2) Articulating provider and insurer factors that limit outcomes for all women and disparities for BAA women. 3) Developing Innovative Tools to Overcome Factors that Limit Outcomes for All Women and Disparities for BAA women. The Community Partnership, Education and Outreach Core, led by the Founder of the Fibroid Foundation, will represent woman with UF at every stage and be the authoritative educational source of information about ethical, psychological, scientific, legislative, and advocacy issues related to uterine fibroids via a weekly briefing summary, alerts, podcasts and multiple modalities of dissemination and will mentor and train the next generation of policy leaders through a student internship program. The Administrative Core will provide logistic, communication and scientific support to all work and train the next generation of academic and lay leaders through selection of pilot projects to bring diverse early-stage investigators into the field and via succession planning within the collaboration. The findings of COEQUaL will impact every facet of UF care and will improve experience for all women but especially focus on the health disparities experienced by BAA women. This work will also change the clinical paradigm for clinical care by creating tools for women, healthcare providers, and healthcare systems to empower personalized and evidence-based decision making. 1
