Background: In Sedgwick County, Kansas, the preterm birth rate among African-American women is 44 percent higher than that of women from all other racial/ethnic groups. These disparities stem from racial discrimination over the mother's life span. Despite some work on racial discrimination and stress, significant underinvestment in family support and healthcare programs continue to contribute to the alarming trends in maternal and infant health.
Solution: To address this problem, the project team will build upon existing partnerships and programming at the University of Kansas School of Medicine, Department of Population Health to implement a three-step solution in Sedgwick County. First, the team will convene a diverse group of stakeholders who are members of the local alumni chapters of historically African-American Greek-letter fraternities and sororities, minority researchers and clinicians, and patients. Next, the team will train a large group of patients, community leaders, and healthcare professionals in patient-centered outcomes research and comparative effectiveness reserach (PCOR/CER) best practices. Lastly, the team will work with the trainees to launch the Kansas Birth Equity Network and develop a five-year plan for conducting PCOR/CER.
- To enroll and train a large group (n=50) of patients, community leaders, and healthcare professionals in PCOR/CER best practices using a proven curriculum
- To launch the Kansas Birth Equity Network (K-BEN) and develop a five-year plan for conducting PCOR/CER within the target population
- To engage additional state and regional stakeholders to assure K-BEN sustainability, carry out the five-year plan, and develop best practices to disseminate PCOR/CER study findings
Activities: The project team comprised of project lead, minority researchers and clinicians, Sisters and Brothers for Healthy Infants advisory group, patients, and stakeholders will: adopt and apply the PCORI Methodology Standards to maximize patient-centeredness and engagement; leverage PCORI’s Engagement Rubric to conduct two community listening sessions for patients and community stakeholders; host six open access birth equity trainings on PCOR/CER methods, develop a five-year research plan on improving neonatal outcomes, and disseminate PCOR/CER project activities and research priorities.
- Development of a tailored Birth Equity Trainee Curriculum to increase capacity among diverse stakeholders to engage as partners of maternal and child health-related PCOR
- Creation of a sustainable Kansas Birth Equity Network (K-BEN)
- Creation of a five-year research plan for conducting maternal and child health PCOR/CER within the target population
- Coordination of two diverse stakeholder-led community forums to disseminate project activities, findings, and research priorities to stakeholders in the broader community
Patient and Stakeholder Engagement Plan: The advisory board will have at least 12 members of historically African-American fraternities and sororities, patients, and minority researchers and clinicians. The project team will also mentor two African-American mothers and fathers as members of the project leadership team. Lastly, the project team will build and sustain K-BEN, which will consist of at least 50 percent patients.
Project Collaborators: Collaborators include fraternity and sorority members, patients, Mid-Kansas Women’s Health, Sedgwick County Health Department, HealthCore Clinic, Hunter Health Clinic, and St. Mark United Methodist Church.