Coordinating Collaboration to Improve Research

This article was originally published in our Spring 2024 Bleeding Times Magazine. See the entire magazine by clicking here.

Article Author: NBDF Research Department Leadership

The National Bleeding Disorders Foundation (NBDF), formerly the National Hemophilia Foundation (NHF), recently hosted the National Research Blueprint (NRB) Summit from January 25 to January 27 in Arlington, VA.

NBDF began this research project in 2019 with their Blue Sky Vision. Five years later, they used the NRB Summit to announce the final draft of their 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 of the following working groups: Research & Development, Workforce, Infrastructure, Policy, Community Engagement, Lived Experience Experts, and Health Equity, Diversity, and Inclusion (HEDI) 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.

NYCHC Executive Director, Jeremy Griffin, has been actively engaged in NBDF’s research endeavors for several years and serves as chair of the NRB’s Community Engagement Committee. Asked about why he contributed to the NRB, and what impact it will have for our community, he said, “I believe that research works best when it accurately represents the needs of the people. The National Research Blueprint is our best opportunity to engage a diverse set of Lived Experience Experts in co-creation in order to ultimately drive innovation. I have never been part of a national initiative with more importance or potential!”

For more information and to see how you can get involved, click here or visit www.hemophilia.org.