Research agenda and related workforce requirements inspired by Lived Experience Experts and grounded in health equity for the Bleeding Disorders Research Collaborative.

BACKGROUND

Inheritable bleeding disorders (BDs) research has not historically reflected the diversity or needs of the entire community. The National Bleeding Disorders Foundation charged seven multidisciplinary working groups (WGs) with developing a U.S. National Research Blueprint (NRB) for a Bleeding Disorders Research Collaborative (BDRC) inspired by Lived Experience Experts (LEE) and grounded in health equity, diversity, and inclusion (HEDI).

RESEARCH DESIGN AND

METHODS

The Research and Development and Workforce WGs, in collaboration with the HEDI and LEE WGs, met virtually and in-person to develop recommendations for BDRC operationalization.

RESULTS

An agenda of 327 feasible research priorities spanning nine main topics, each with four to six scientific areas of interest is proposed. It captures the hope that new diagnostic and therapeutic technologies and innovative research approaches enriched by LEE and HEDI expertise may advance health equity for all. Key constraints of time, expertise, funding, resources, and diversity were identified as important barriers to the capacitation of the interdisciplinary research workforce required to successfully achieve this research. Mentorship, partnership, training and education, collaboration, and advocacy solutions to these barriers are proposed.

CONCLUSIONS

The BDRC seeks to capacitate a diverse, inclusive, collaborative workforce, and effectively accelerate research that advances health equity for all.