Susan Slingluff Hartmann: How NBDF and the BDRC Are Putting Lived Experience at the Heart of Studies
Susan Slingluff Hartmann, Executive Director at College Park City-University Partnership, shared a post on LinkedIn:
“National Bleeding Disorders Foundation is at the forefront of patient-centered research!
The Bleeding Disorders Research Collaborative (BDRC) has been a broad community-based effort, expertly facilitated by very talented and committed NBDF staff.
Kudos to the team and to everyone who working to center lived experience experts (LEEs) in research!
‘When patients define priorities, research targets what is most important to them,’ said Maria Santaella, senior vice president of research strategy at NBDF.
‘And when they help design the studies, the studies are stronger, the resulting evidence is more relevant, and the path to implementation gets shorter.'”
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