On May 15th, 2024, the SMASH-HCM project team met with patient organisations from the United Kingdom, Ireland, Finland, and Italy to discuss our innovative approach to improving the stratification and management of Hypertrophic Cardiomyopathy (HCM) through digital twin technology. Representatives from Cardiomyopathy UK, CRY Ireland, ERN Guard-Heart (Italy), and Sydänliitto (Finnish Heart Association) provided invaluable insights and feedback that will help guide our project’s development.
During the meeting, the SMASH-HCM project was introduced to the patient organisations, highlighting its potential to dramatically enhance HCM care by integrating multilevel and multiorgan dynamic biophysical and data-driven models into a three-level deep phenotyping approach. The discussion focused on understanding the viewpoints, needs, and inputs from a patient perspective, ensuring that our digital twin platform addresses the unique challenges faced by individuals living with HCM.
Several key messages emerged from the call:
- Raising awareness: Increasing information, advocacy, knowledge, and literacy about digital twins among patients is essential for widespread acceptance.
- Communication: Establishing a communication channel between patients and clinicians could facilitate better care.
- Mental health data: Collecting data on patients’ mental health through Patient Reported Outcome Measures (PROMs) could help identify additional healthcare needs.
- Patient feedback: Developing a simple qualitative survey for patients to provide feedback on the features and value proposition of our digital twin app would be beneficial.
The SMASH-HCM team is excited to continue collaborating with these patient organisations, with plans for a follow-up meeting in the fall of 2024 to review software requirements from a patient perspective. By incorporating the insights and experiences of those directly affected by HCM, we can ensure that our digital twin platform delivers meaningful improvements in patient care and outcomes.
As we progress towards our goal of providing personalised, cost-efficient, and effective solutions for this complex disease, the SMASH-HCM project remains committed to engaging with patients and their representatives every step of the way. Together, we can transform the landscape of HCM care and serve as a model for future digital twin platforms targeting other cardiac diseases.