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

Creator(s)

• Lynn Malec
• Moses E. Miles
• Lauren Amos MD, Children's Mercy HospitalFollow
• Samantha A. Carlson
• Donna DiMichele
• Iftikhar Haider
• Andra H. James
• Keri L. Norris
• Kristin Paulyson-Nuñez
• Michael Recht
• Fiona Robinson
• Maria E. Santaella
• Raymond W. Stanhope
• Sammie Valadez
• Michelle L. Witkop
• Ziva Mann
• Amy D. Shapiro
• Margaret V. Ragni

Document Type

Article

Publication Date

8-2026

Identifier

DOI: 10.1080/17474086.2026.2688869

Abstract

BACKGROUND: 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).

RESEARCH DESIGN AND METHODS: The Infrastructure and Workforce WGs, in collaboration with the HEDI and LEE WGs, met virtually to develop recommendations for BDRC operationalization.

RESULTS: 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.

CONCLUSIONS: BDRC infrastructure and workforce development must start small and grow iteratively in partnership with the many organizations that share its vision of health justice.

Journal Title

Expert Rev Hematol

Volume

19

Issue

sup1

First Page

43

Last Page

62

MeSH Keywords

Humans; Health Equity; Biomedical Research; Workforce; Blood Coagulation Disorders, Inherited; Cooperative Behavior

PubMed ID

42563288

Keywords

Lived Experience Experts; blood coagulation disorders; community; dynamic governance; health equity; infrastructure

Recommended Citation

Malec L, Miles ME 3rd, Amos LE, et al. Infrastructure and workforce development processes inspired by Lived Experience Experts and grounded in health equity for the Bleeding Disorders Research Collaborative. Expert Rev Hematol. 2026;19(sup1):43-62. doi:10.1080/17474086.2026.2688869