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

Dr. Amy Shapiro, Meadow Heiman

The National Research Blueprint (NRB) was a U.S. National Bleeding Disorders Foundation (NBDF) initiative to better understand all facets impacting research and to set the foundation for what and how inheritable bleeding disorders research should be done in the future. The personal journeys of Lived Experience Experts (LEEs), individuals living with disorders, are highly valuable. It is critical to incorporate them throughout all stages of future research. The NRB made sure LEEs were heard from the very beginning of the development process and throughout. The goal was to place diverse LEEs from across the community at the center of research, with all collaborative partners recognizing LEEs as equal partners. One NRB working group developed a list of priorities to make future inheritable bleeding disorders research more inclusive and reflective of the community. They combined community input and medical, research, and lived experience expertise to choose 327 top research priorities. They ensured all priorities were feasible. Another working group conducted a survey of the current workforce at bleeding disorders centers, often called hemophilia treatment centers (HTC). They asked the different professionals about their interest, capacity, and barriers in doing research. Based on the results, they proposed training and resources needed to develop a diverse workforce that can ensure successful future research. There is a great potential for collaborative research across the country. HTCs can act as hubs in a network of national partnerships. The incorporation of LEEs as valued partners in this Bleeding Disorders Research Collaborative is imperative. Cross-training of LEEs, HTC professionals, and other researchers will be necessary to ensure its success.

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.

Keywords: Lived Experience Experts; blood coagulation disorders; collaboration; community; research agenda; workforce.