Related Experiment Video
Updated: Aug 8, 2026
14:43
A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
Published on: January 12, 2018
Infrastructure and workforce development processes inspired by Lived Experience Experts and grounded in health equity
Lynn Malec1,2,3, Moses E Miles4, Lauren E Amos5
1Versiti Comprehensive Center for Bleeding Disorders, Milwaukee, WI, USA.
Expert Review of Hematology
|August 7, 2026
Summary
A new approach for inheritable bleeding disorders research prioritizes health equity, diversity, and inclusion (HEDI). It centers Lived Experience Experts (LEEs) to guide research from idea to completion within the Bleeding Disorders Research Collaborative (BDRC).
Area of Science:
- Hematology
- Public Health
- Health Equity Research
Background:
- Inheritable bleeding disorders research requires a novel approach centered on health equity, diversity, and inclusion (HEDI).
- The National Bleeding Disorders Foundation established working groups to develop a National Research Blueprint (NRB) for the Bleeding Disorders Research Collaborative (BDRC).
- This blueprint emphasizes centering the knowledge of Lived Experience Experts (LEEs).
Purpose of the Study:
- To develop recommendations for the operationalization of the Bleeding Disorders Research Collaborative (BDRC).
- To outline the infrastructure and workforce development necessary for the BDRC.
- To integrate HEDI principles and LEE expertise into the BDRC's framework.
Main Methods:
- Virtual meetings were held by Infrastructure and Workforce Working Groups (WGs) in collaboration with HEDI and LEE WGs.
- Recommendations were developed for BDRC operationalization, focusing on infrastructure and workforce.
- The process involved defining components for research idea progression, project completion, and accountability.
Main Results:
- A progressive network is proposed to translate community-prioritized research ideas into successful BDRC projects.
- Key components for launching, evolving, conducting, and ensuring accountability of research are described.
- Synergistic efficiencies are expected through resource sharing and integrating research into care.
- Education and training plans for interdisciplinary teams, including LEEs and HEDI champions, are detailed.
- Shared leadership models integrating LEE and HEDI expertise are outlined for dynamic governance.
Conclusions:
- BDRC infrastructure and workforce development should commence with a small, iterative growth strategy.
- Partnerships with organizations sharing a vision for health justice are crucial for BDRC development.
- The BDRC aims to foster a collaborative environment for advancing research in inheritable bleeding disorders.
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