The entire State of the Science Research Summit and this manuscript were funded by the National Hemophilia Foundation (NHF).
Expert Review of Hematology
Community-based participatory research, diversity, equity, inclusion; Health equity, Health services research, Implementation science, Inherited bleeding disorders; National Hemophilia Foundation; Public health
Background: The National Hemophilia Foundation (NHF) conducted extensive all-stakeholder inherited bleeding disorder (BD) community consultations to inform a blueprint for future research. Sustaining and expanding the specialized and comprehensive Hemophilia Treatment Center care model, to better serve all people with inherited BDs (PWIBD), and increasing equitable access to optimal health emerged as top priorities. Research Design and Methods: NHF, with the American Thrombosis and Hemostasis Network (ATHN), convened multidisciplinary expert working groups (WG) to distill priority research initiatives from consultation findings. WG5 was charged with prioritizing health services research (HSR); diversity, equity, and inclusion (DEI); and implementation science (IS) research initiatives to advance community-identified priorities. Results: WG5 identified multiple priority research themes and initiatives essential to capitalizing on this potential. Formative studies using qualitative and mixed methods approaches should be conducted to characterize issues and meaningfully investigate interventions. Investment in HSR, DEI and IS education, training, and workforce development are vital. Conclusions: An enormous amount of work is required in the areas of HSR, DEI, and IS, which have received inadequate attention in inherited BDs. This research has great potential to evolve the experiences of PWIBD, deliver transformational community-based care, and advance health equity.
© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
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Vanessa R. Byams, Judith R. Baker, Cindy Bailey, Nathan T. Connell, Melissa S. Creary, Randall G. Curtis, Alexis Dinno, Christine J. Guelcher, Michelle Kim, Roshni Kulkarni, Susan Lattimore, Keri L. Norris, Lucy Ramirez, Mark W. Skinner, Susan Symington, Patricia Tobase, Esmeralda Vázquez, Beth B. Warren, Emily Wheat & Tyler W. Buckner (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science, Expert Review of Hematology, 16:sup1, 87-106, DOI: 10.1080/17474086.2023.2183836