Expert review of hematology · 2026
Lived Experience Expert, community engagement, policy, and health equity, diversity, and inclusion elements of the Bleeding Disorders Research Collaborative.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Davis Kyle A, Mermilliod Nathan, Griffin Jeremy, Carlson Samantha A, Burke Cirelli Erin, Conde Michelle, DiMichele Donna, Dinno Alexis, Glenzer Michael, Kulkarni Roshni, Legere Regina, Melton Marissa, Norris Keri L, Pezzillo Richard, Recht Michael, Robinson Fiona, Santaella Maria E, Schaefer Nathan, Stanhope Raymond W, Valadez Sammie, Valentino Leonard A, Vázquez Esmeralda, Williams Mosi, Witkop Michelle, Carpenter Shannon L
Аннотация
BACKGROUND: The U.S. National Bleeding Disorders Foundation charged seven multidisciplinary working groups (WGs) with developing a National Research Blueprint (NRB) for a novel Bleeding Disorders Research Collaborative (BDRC) firmly rooted in health equity, diversity, and inclusion (HEDI) and centering the knowledge of people living with inheritable bleeding disorders, the Lived Experience Experts (LEEs).
RESEARCH DESIGN AND METHODS: The HEDI, LEE, Community Engagement, and Policy WGs met virtually to develop recommendations for BDRC design and operationalization.
RESULTS: Engaging, empowering, and elevating guidance and practices to ground BDRC research and operations in HEDI principles are detailed. The full potential of integrating LEE knowledge throughout research conduct and BDRC governance is explored, potential barriers identified, and solutions proposed. Investing in relationships, trust, and transparency are elaborated as keys to meeting community members wherever they are on a research engagement continuum and facilitating desired progression. Expert advocacy and partnerships will be essential to securing policies and funding supporting the BDRC.
CONCLUSIONS: The proposed community-inspired BDRC has the potential to catalyze a paradigm shift in U.S. inheritable bleeding disorders research and ultimately advance health equity for all.
RESEARCH DESIGN AND METHODS: The HEDI, LEE, Community Engagement, and Policy WGs met virtually to develop recommendations for BDRC design and operationalization.
RESULTS: Engaging, empowering, and elevating guidance and practices to ground BDRC research and operations in HEDI principles are detailed. The full potential of integrating LEE knowledge throughout research conduct and BDRC governance is explored, potential barriers identified, and solutions proposed. Investing in relationships, trust, and transparency are elaborated as keys to meeting community members wherever they are on a research engagement continuum and facilitating desired progression. Expert advocacy and partnerships will be essential to securing policies and funding supporting the BDRC.
CONCLUSIONS: The proposed community-inspired BDRC has the potential to catalyze a paradigm shift in U.S. inheritable bleeding disorders research and ultimately advance health equity for all.