Kyle A. Davis, Nathan Mermilliod, Jeremy Griffin, Samantha Carlson, Erin Burke Cirelli, Michelle Conde, Donna DiMichele, Alexis Dinno, Michael Glenzer, Roshni Kulkarni, Regina Legere, Marissa Melton, Keri L. Norris, Richard Pezzillo, Michael Recht, Fiona Robinson, Maria E. Santaella, Nathan Schaefer, Raymond W Stanhope, Sammie Valadez, Leonard A. Valentino, Esmeralda Vázquez, Mosi Williams, Michelle Witkop, Shannon L. Carpenter
The proposed community-inspired BDRC has the potential to catalyze a paradigm shift in U.S. inheritable bleeding disorders research and ultimately advance health equity for all.
BACKGROUND: The U.S. National Bleeding Disorders Foundation charged seven multidisciplinary working groups (WGs) with developing a National Research Blueprint (NRB) for a novel Bleeding Disorders Research Collaborative (BDRC) firmly rooted in health equity, diversity, and inclusion (HEDI) and centering the knowledge of people living with inheritable bleeding disorders, the Lived Experience Experts (LEEs). RESEARCH DESIGN AND METHODS: The HEDI, LEE, Community Engagement, and Policy WGs met virtually to develop recommendations for BDRC design and operationalization. RESULTS: Engaging, empowering, and elevating guidance and practices to ground BDRC research and operations in HEDI principles are detailed. The full potential of integrating LEE knowledge throughout research conduct and BDRC governance is explored, potential barriers identified, and solutions proposed. Investing in relationships, trust, and transparency are elaborated as keys to meeting community members wherever they are on a research engagement continuum and facilitating desired progression. Expert advocacy and partnerships will be essential to securing policies and funding supporting the BDRC. CONCLUSIONS: The proposed community-inspired BDRC has the potential to catalyze a paradigm shift in U.S. inheritable bleeding disorders research and ultimately advance health equity for all.