Background: In the United States, African American birthing people and infants have alarming, disparate adverse reproductive/perinatal health experiences and outcomes. Black women are three to four times more likely to experience pregnancy-related morbidity and death than their white counterparts, while infant mortality rates are 2.3 times higher among Black infants than non-Hispanic white infants.
Many reproductive/perinatal health interventions are based on research that did not engage marginalized patient communities or incorporate their particular needs and circumstances into the research process. Without the inclusion of the patient-community, comparative clinical effectiveness research (CER) on interventions will likely produce results that are neither meaningful nor accessible to patients. Like we have seen in Washington, D.C., maternal mortality rates will continue to remain stagnant or rise in the highest areas of need.
Proposed Solution to the Problem: The project team will host a 2-day symposium to convene multiple stakeholders in the Greater D.C. area to build a patient-centered outcome research (PCOR) agenda focused on eliminating racial disparities in reproductive health care and perinatal outcomes. More specifically, the project team will work collaboratively with stakeholders to highlight what is known regarding maternal health and morbidity, identify additional gaps, and determine what is further needed to address issues affecting African American birthing people.
Objectives: The primary objective of this project is to convene a 2-day symposium to accelerate the transfer of knowledge among a diverse group of stakeholders, surrounding the improvement of reproductive and perinatal health outcomes for African American birthing people and infants.
- Facilitate a multistakeholder discussion around patient-centered research design and development of PCOR that uses new approaches to address reproductive/perinatal health disparities
- Meaningfully engage the patient community of African American birthing people by building a patient partner network with influence equal to that of other stakeholders
- Promote collaborative relationships among stakeholders to increase meaningful engagement of peer partners in CER and in future health agenda-setting conversations
- Foster supportive and respectful interaction among patient and provider communities for the opportunity to coproduce and share knowledge
- Uncover unmet clinical and social needs for African American birthing people
- Develop recommendations for how future CER studies can more fully address patient community priorities around reproductive/perinatal health
Projected Outcomes and Outputs:
Short-term outcomes during the project period include partnerships and
resource connection surrounding reproductive/perinatal health equity; stakeholder-driven action steps that are nuanced, accurate, and context-sensitive for addressing disparities in reproductive/perinatal health, attributable to including diverse and patient-community voices; and identified opportunities for future peer- and patient-engaged PCOR/CER.
Medium-term outcomes (0-2 years post-project period) include actions that address the needs and issues identified at the symposium; small-scale evaluations such as service/medical provider’s conducting internal reviews of programs, service delivery, and/or processes; large, rigorous interventions; and guidance on multi-stakeholder engagement methods committed to meaningful patient community inclusion.
Long-term outcomes (3+ years post-project period) include procedural changes to address barriers and contributing factors to reproductive/perinatal health equity.
Patient and Stakeholder Engagement Plan: The project utilizes a community-based participatory research (CBPR) approach. CBPR recognizes lived experience as expertise. It equitably involves community members, researchers, and others in all aspects of the research process with all partners contributing expertise and sharing in the decision-making. In this project, the patient community are actively involved in symposium planning, recruiting attendees, conducting interviews, establishing the research agenda, and disseminating findings. Involvement in these aspects is vital to the project to ensure the goals and objectives align with the local community’s desires and existing efforts.