Infrastructure and workforce development processes inspired by Lived Experience Experts and grounded in health equity for the Bleeding Disorders Research Collaborative.

内容摘要

Accelerating research advancing health equity for the entire inheritable bleeding disorders community requires a new approach. It must be firmly rooted in health equity, diversity, and inclusion (HEDI) and center the knowledge of people living with inheritable bleeding disorders, the Lived Experience Experts (LEEs). The National Bleeding Disorders Foundation charged seven multidisciplinary working groups (WGs) with developing a National Research Blueprint (NRB) for this Bleeding Disorders Research Collaborative (BDRC). The Infrastructure and Workforce WGs, in collaboration with the HEDI and LEE WGs, met virtually to develop recommendations for BDRC operationalization. A progressive network of elements and processes capacitating diverse community-prioritized research ideas into successfully completed BDRC projects is proposed. Essential components for launch, iterative evolution, effective conduct, and accountability are described. Sharing resources and expertise and embedding research in inheritable bleeding disorders care will create synergistic efficiencies. Education and training to grow and empower interdisciplinary research teams, including LEEs and HEDI champions as valued members, are detailed. Shared leadership integrating LEE and HEDI expertise throughout will provide dynamic governance. BDRC infrastructure and workforce development must start small and grow iteratively in partnership with the many organizations that share its vision of health justice. The National Research Blueprint is a proposal for a new Bleeding Disorders Research Collaborative (BDRC) doing the research people with bleeding disorders need and want. The people who live with a disorder, and their close family members affected by it, are Lived Experience Experts. The new collaborative will place Lived Experience Experts at the center of research. What research is done, how it is done, and how the results are used and shared must be decided in partnership with lived experience expertise. The collaborative must also advance health equity for all. Every initiative and project must improve diversity, inclusion, and belonging.This paper proposes infrastructure and workforce development processes for the new research collaborative. Recommendations were developed by groups of clinical, research, lived experience, and health equity experts. The groups made sure everyone was able to contribute meaningfully and confidently. Every voice was heard and valued. This is also how the collaborative must operate, with shared leadership and teams that are trained to work well together. Education and processes are proposed to develop a diverse, inclusive interdisciplinary workforce, reflecting the community it serves and integrating lived experience expertise throughout. The proposed infrastructure is a network of expertise, resources, facilities, and processes, all connected by a platform. It is designed to start small, with just enough of each component to support a few simple projects. All projects will be evaluated to learn what works well and what can be improved. The whole collaborative will improve with learnings from each success and shortcoming.