NBCA Insights with Erin VanDyke: Revealing Gaps in Blood Clot Diagnosis and Support
Erin VanDyke, Vice President of NBCA Centers of Excellence, posted on LinkedIn:
“As data continues to evolve and we refine how we risk stratify VTE patients, build programs, and ensure follow-up aligned with best practice, it’s important not to lose sight of a critical piece of the puzzle: the patient voice.
Patients can often see gaps in care that the data doesn’t capture.
Their lived experience provides invaluable perspective that can guide us toward meaningful improvements.
By actively listening to their feedback and involving them in decision-making, we have the opportunity to deliver care that is not only evidence-based, but also patient-centered.
The science will keep moving forward—but let’s make sure our patients are moving forward with us. ”
Quoting National Blood Clot Alliance’s post:
“Your voice is shaping blood clot care!
In 2023, NBCA launched the first large-scale, international survey to capture blood clot patient experiences and identify gaps in care.
We continue to be grateful to the more than 1,050 survivors who took the survey. Your voice is being heard and prioritized by the medical community at the highest levels. The data has been:
- Presented at Argon Medical’s Venous Experts Symposium last week
- Listed in ScienceDirect, a platform used by hospitals, universities, and researchers around the world
- Presented at the 2024 American Society of Hematology annual conference
- Published in the peer-reviewed journal Blood Vessels, Thrombosis and Hemostasis
Key findings:
- Only 55% were satisfied with how their diagnosis was explained
- 1 in 3 reported misdiagnosis, often requiring multiple visits
- Just 15% received written/electronic info at diagnosis. Most wanted guidance on recurrence, mental health, prevention strategies, and patient support, but only 2% received this information.
Read more here.”
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