Walking the Walk: Inclusion of Lived Experience Experts in the Design of the National Hemophilia Foundation's National Research Blueprint for Those Living with Inherited Bleeding Disorders

Abstract

BACKGROUND: The National Hemophilia Foundation's (NHF) vision of a world without inheritable blood disorders begins with research. To that end, we have initiated a multi-year project with the goal of building a transformational research enterprise through full community-engagement. Building this innovative research ecosystem has required us to rethink how we prioritize research questions mattering most to those impacted by and caring for people with inheritable bleeding disorders (Lived Experience Experts (LEEs)), how we democratize the research culture and structure to streamline efforts, and how we ensure research findings are disseminated, relevant, representative, and inclusive. As a result of the Research State of the Science Summit in September 2021, considerable progress has been made in identifying areas most urgently requiring attention to make the greatest impact for the future. Over the past year, members of the National Research Blueprint's (NRB) steering committee (SC) and working groups (WGs) have worked to produce the necessary components to launch, sustain, and expand a research network in which LEEs contribute at all levels. Inherent in this strategy is the involvement of the LEE in research prioritization, design, implementation, and analysis as an equal partner to the traditional research team members. To demonstrate the important role played by LEEs in this process, we report the demographic make-up of the members of the NRB SC and WGs to demonstrate the large LEE presense in this effort. METHODS: Based on the insights generated during the SOS, in addition to the SC, seven multi-disciplinary NRB WGs have been created: Community Engagement; Health Equity, Diversity, and Inclusion; Infrastructure; Lived Experience Experts (defined as individuals, their caregivers, and family members directly impacted by inheritable bleeding disorders, whose diverse and personal knowledge gives each individual the unique ability to translate lived experiences into meaningful system change); Policy; Research and Development; and Workforce (Figure 1). The WGs have been charged with addressing critical questions in the creation, sustainability, and eventual expansion of this LEE-focused research network. We collected basic demographic information for members of the SC and WGs. RESULTS: A total of 62 individuals are currently participating as members of either the NRB SC or WGs. Of these SC or WG members, 36 (58%) are female and 26 (42%) are male. Fourteen (23%) individuals are Black, Indigenous, or People of Color. Thirty SC or WG members are LEEs (48%). Twelve (33%) of the females are LEEs. Eighteen (60%) of the males are LEEs. A total of 29 (47%) of the SC and WG members are professional health-care providers (HCPs), defined as an individual with an academic degree allowing the provision of medical care to people. Twenty (69%) of the female SC or WG members are providers. Nine (31%) of the male SC or WG members are HCPs. Of the participating HCPs, 6 (21%) are LEEs including 2 (10%) who are female and four (44%) who are male (Table 1). CONCLUSIONS: The NHF's multi-year process of building the National Research Blueprint for inheritable bleeding disorders has prioritized the participation of people most familiar with bleeding disorders, the LEEs, from the beginning of the process. By including LEEs in all steps of development of this endeavor, each of the WGs have benefited from the exchange of ideas and insights from the LEEs, resulting in an innovative and inclusive approach to asking questions most impactful to those affected by inheritable bleeding disorders. Almost half of the members of the NRB SC and WGs are LEEs, who are also well represented among HCPs in dual roles. The NRB, driven by, for, and with LEEs, will redefine the inheritable bleeding disorders research landscape.