Heart Health India Foundation’s founder, Ram Khandelwal, recently had the opportunity to attend the Cardiomyopathy Patient Council Meeting in Windsor, UK, organized by the Global Heart Hub. This international gathering brought together patient leaders and experts to discuss cardiomyopathy—a heart muscle disease that affects between 1 in 250 to 500 people globally. The condition can lead to heart failure, sudden cardiac death, or the need for heart transplants, making it a critical issue for global health.
During this time, Ram engaged in discussions on how patient perspectives from different regions are shaping the heart health ecosystem, the challenges faced by cardiomyopathy patients and their families, and the evolution of care models. The meeting highlighted the importance of partnerships in building a truly patient-centric heart care system.
Here are the five key insights Ram took away from this invaluable experience:
1. Patient-Led Research Drives Impactful Insights
One of the most enlightening discussions focused on the power of patient-led research. Studies like the IPEC project on high cholesterol, presented at ISPOR 2024, demonstrate how research driven by patients can generate crucial data that often leads to more accurate and impactful outcomes. Cardiomyopathy patients, with their lived experiences, have the ability to uncover insights that traditional research may miss, creating a stronger foundation for better care.
2. Education is Key to Preventing Misdiagnosis and Delays
Educating both patients and healthcare professionals about the symptoms of cardiomyopathy—such as fainting, breathlessness, fatigue, palpitations, and chest pain—can significantly reduce misdiagnosis and treatment delays. The #ThinkCardiomyopathy movement should be a global effort to raise awareness and ensure timely diagnosis, especially among primary healthcare providers who may miss these critical signs.
3. Family History Must Go Beyond Sudden Cardiac Arrest
A key takeaway was the importance of looking beyond sudden cardiac arrest when evaluating family history. Conditions like heart failure, hypertension, transplants, and diabetes in extended family members must also be considered. This broader understanding of familial health risks is vital for accurate diagnosis and effective management of cardiomyopathy.
4. The Role of Autopsies and Genetic Testing
Autopsies and genetic testing are crucial tools in understanding inherited heart diseases. Autopsies, especially after sudden cardiac death, provide critical insights into the presence of cardiomyopathy and other heart conditions. Genetic testing should become a standard protocol, ensuring surviving family members receive the necessary evaluations and interventions in time.
5. Global Collaboration is Essential
The creation of a patient-centric ecosystem requires a unified global approach. This includes raising awareness, training primary healthcare professionals, developing clear protocols, and ensuring family-level testing is accessible. Collective action is necessary to bring about long-lasting, meaningful change for cardiomyopathy care worldwide.
Ram was deeply inspired by the contributions of other cardiovascular disease patient organizations like Heart Health India Foundation, which are dedicated to public awareness, patient support, and policy advocacy. Many of these organizations began due to personal experiences and now lead efforts to empower patients and their families by providing the support they need.
Special thanks to Neil, Leigh, Patricia, David, Joanna, and Karen for organizing such an impactful event, and to experts like Prof Hugh Watkins (Oxford University), Prof Joe Desbonnet (University of Galway), Susan Hennessy (University of California), Joe V (AppliedPX), Jean, and others who generously shared their knowledge. Ram also expressed his gratitude to his fellow patient leaders—Matteo, Ruth, Pam, Annie, Joel, Greg, Marianne, Hannah, Lisa, Emil, Jodi, Mandy, Ester, Marcia, Genevie, and Linda—for their warmth, insights, and dedication.
At Heart Health India Foundation, we believe that the future of heart care must be shaped with patients, not just for them. Let’s continue to work together to create a world where no one has to face their heart health challenges alone.
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