Pain Language Summary: 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.
