NBDF hosted the National Research Blueprint Summit January 25-27 in Arlington, VA to announce the final draft of the Blueprint. Based on the product of the State of the Science, the NRB is defining a comprehensive, collaborative, and community-driven national research strategy that prioritizes patient and caregivers – Lived Experience Experts (LEE) throughout the full spectrum of research. This is called community based participatory research. Incorporating everyone into the process of research.
At the Summit, each working group: Research & Development, Workforce, Infrastructure, Policy, Community Engagement, Lived Experience Experts, and Health Equity, Diversity, and Inclusion highlighted the priorities on how to coordinate effective collaboration to improve research in the bleeding disorder community. The Steering Committee combined the recommendations into one large structured plan; incorporating HEDI & LEE principles throughout the entire structure. Historically, LEEs have been participants in clinical trials. Through this initiative, LEEs will be part of the entire process from identifying research priorities through developing clinical trial design, participant recruitment through a LEE Ambassador program, and sharing the findings in non-scientific language accessible to all.
So what does this mean? NBDF will continue to work with key stakeholders to move forward into the next phases of development. Later this year, NBDF will be announcing the opportunity for people living with bleeding disorders to participate through a LEE Research Ambassador program. For more information on the National Research Blueprint, please visit the NBDF website or review the below resources: