Jennifer Weinstein: Happy to Share Our New Work on the Patient Experience in VWD at the NBDF Conference
Jennifer Weinstein, Assistant Director at University of Rochester Medicine Center for Health and Technology (CHeT), shared a post on LinkedIn:
“I’m grateful for the opportunity to have attended the National Bleeding Disorders Foundation (NBDF) conference, sharing two pieces of our work at the University of Rochester Medicine Center for Health and Technology (CHeT) focused on the patient experience in von Willebrand disease (VWD).
One poster explored the lived experiences of women with VWD, bringing their own words forward to highlight recurring experiences—from recognizing abnormal bleeding and the need for validation of symptoms, to challenges in reaching a diagnosis and living with a condition that is not always well understood by others.
Our second poster focused on the development of the VWD-HI, a patient-reported outcome measure designed to capture the impact of VWD from the patient perspective. It was especially meaningful to share how this work has progressed from instrument development to implementation in the VIVID 6 clinical trial with Incyte Pharmaceuticals.
Together, these projects reinforced an important theme for me: meaningful patient-centered research starts with listening, but it also requires finding rigorous ways to carry the patient voice forward into clinical research and, ultimately, our understanding of treatment outcomes.
I left NBDF encouraged by the conversations, collaboration, and continued commitment to advocating for greater recognition of the experiences of females living with VWD.”
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