Abstract 4373057: Tethered Patient-Clinician Education to Improve Awareness and Treatment of Hypertrophic Cardiomyopathy (HCM): A Social Media–Driven Approach

Background: Despite advances in the diagnosis and treatment of hypertrophic cardiomyopathy (HCM), many patients feel disconnected from their clinicians and dissatisfied with their care. Educating patients on social media platforms and using insights from these campaigns to drive continuing education (CE) for clinicians is a proven method to increase awareness among both patients and clinicians. Hypothesis/Goals: This initiative was designed to raise awareness of HCM, highlight patient-reported challenges, and use patient insights to drive clinician understanding of patients with HCM and promote more effective care. Methods: In September 2024, Vindico Medical Education launched a tethered patient-clinician initiative that featured content creator-driven patient education on Instagram, YouTube, and TikTok and a survey of patients with HCM and caregivers, findings from which were used to develop a web-based CE activity for clinicians. Clinicians’ knowledge and practice behaviors were assessed pre- and post-activity. Results: The social media campaign generated 667,002 views and 10,767 engagements. Survey data from 115 patients with HCM and caregivers revealed significant unmet needs: 76% reported worsening symptoms since their diagnosis, fewer than 50% felt their current therapies and lifestyle changes were effective, and only 15% were extremely satisfied with their current medications. When asked what patients would change about their management, a common theme was the desire for earlier diagnosis. These insights informed the CE activity, which included 414 cardiologists and 265 primary care providers (PCPs). Post-education, knowledge of diagnostic procedures increased 30% overall, which translated to 25% of clinicians planning to implement practice improvements towards earlier diagnosis. Regarding treatment, at baseline, only 21% of cardiologists were using recently approved options, yet post-education, there was a 20% increase in knowledge of approved options among cardiologists and a 38% increase among PCPs, which translated to 54% of treaters being prepared to improve their use of evidence-based treatment. Conclusion: A tethered education model combining patient-driven social media engagement with CE for clinicians improved awareness of real-world patient challenges. Insights from the patient campaign and the survey contributed to measurable improvements in clinicians’ intent to adopt evidence-based diagnostic tools and therapies for patients with HCM.