Infrastructure and workforce development processes inspired by Lived Experience Experts and grounded in health equity for the Bleeding Disorders Research Collaborative.

BACKGROUND: Accelerating research advancing health equity for the entire inheritable bleeding disorders community requires a new approach. It must be firmly rooted in health equity, diversity, and inclusion (HEDI) and center the knowledge of people living with inheritable bleeding disorders, the Lived Experience Experts (LEEs). The National Bleeding Disorders Foundation charged seven multidisciplinary working groups (WGs) with developing a National Research Blueprint (NRB) for this Bleeding Disorders Research Collaborative (BDRC). RESEARCH DESIGN AND METHODS: The Infrastructure and Workforce WGs, in collaboration with the HEDI and LEE WGs, met virtually to develop recommendations for BDRC operationalization. RESULTS: A progressive network of elements and processes capacitating diverse community-prioritized research ideas into successfully completed BDRC projects is proposed. Essential components for launch, iterative evolution, effective conduct, and accountability are described. Sharing resources and expertise and embedding research in inheritable bleeding disorders care will create synergistic efficiencies. Education and training to grow and empower interdisciplinary research teams, including LEEs and HEDI champions as valued members, are detailed. Shared leadership integrating LEE and HEDI expertise throughout will provide dynamic governance. CONCLUSIONS: BDRC infrastructure and workforce development must start small and grow iteratively in partnership with the many organizations that share its vision of health justice.

Duke Scholars

Author Andra Hohler James Obstetrics and Gynecology, Maternal Fetal Medicine