The NRB is organized to enable people affected by inherited bleeding disorders and their loved ones – recognized as lived experience experts (LEEs) – to actively participate and influence the direction of transformational research.
"As a parent navigating health care with a child with two bleeding disorders, I understand the complexity of treating her and know that research is the only way to get her the proper care. For that reason, being involved in research as a LEE is very important to me.”
– Sammie Valadez, LEE participant
LEEs have been integral throughout the NRB process, taking part in conversations, surveys, and working groups that have informed the blueprint. The initiative aims to build a comprehensive understanding of the most pressing issues they face, examine where research can be most impactful, and build a nimble, collaborative, patient-centric, equitable research infrastructure where they are actively partners in each stage of research, such as:
- Helping to plan and design study questions, processes, and goals
- Assisting in the study by participating, helping to recruit participants, and/or reviewing the study findings
- Communicating the importance of the results to the community through easy-to-understand summaries and presentations
The NRB is designed specifically to encourage more involvement of LEEs in bleeding disorders research. This takes into consideration health equity and inclusivity principles, with the goal of building a more diverse participant community that includes under-represented populations, women, girls, and people who have or had the potential to menstruate with bleeding disorders, and individuals with rare and ultra-rare disorders.
LEE participation will be facilitated through an NRB Research Ambassador Program. Using an online portal to create connections and share information, this program will educate and train LEEs on the important aspects of research and how they can meaningfully contribute their lived experiences to support the research goals. Check back soon for more information!
“Having LEE's input, guidance, and insight at every level of the NRB will make research in the Bleeding Disorders Community better and more applicable to all.”
– Ray Stanhope, LEE participant
How have LEEs been involved in the NRB to date?
LEE volunteers have been engrained in the NRB process since day one, participating as members of the SOS and NRB Steering Committees and as contributing members of numerous working groups. Further, LEE participants presented updates on the NRB progress during BDC 2023 and have shared updates on the program with their local chapters.
Listen as LEE representatives talk about their role in the NRB research process during Wednesday Webinars (watch part 1 and part 2). As the SOS manuscripts were prepared for publication in Expert Review of Hematology in March 2023, LEE volunteers prepared plain language summaries featured in each manuscript. A team of LEEs also outlined the importance of integrating LEE voices within the research process and the opportunities for more impactful results to benefit care in a corresponding editorial.
This active partnership of LEEs is one of the most crucial elements to the success of the NRB. If you or a loved one would like to learn more about being a research partner in the NRB, please contact the NRB Steering Committee at research@bleeding.org. You don’t need any research or scientific experience.
"As someone living with a rare bleeding disorder, it's exciting to be involved in discussions about research that could benefit my life and healthcare outcomes. Research becomes more meaningful and relevant when the community is involved."
– Esmeralda Vasquez, LEE NRB representative