The national network is essential to be more effective

In Ragusa, we had the opportunity to welcome AICARM and their project for Expert Patients, which offers a patient-centric perspective on healthcare. I must admit that I was initially skeptical about this initiative, but it turned out to be an extremely productive morning, both for us doctors and for the patients who shared their experiences, and for those who witnessed these stories.

For the doctors, it was a time of sharing and refresher courses. We discussed some minor clinical issues, but the greatest value was the opportunity to look at the disease through the patient's eyes. This allowed us to reflect on the responses we should give patients, not only in clinical terms, but also in terms of our human approach and practical advice for daily life. These people face complex illnesses, often require defibrillators or have a particular life expectancy, such as waiting for a transplant. They need a point of reference, to fully adhere to treatment, and to have faith in the future, to understand how to live their lives while living with the disease. This was the added value that I greatly appreciated. I'm pleased and hope to give this initiative a future next year.

This is crucial. Let's learn from those who have begun this journey before us. Having the opportunity to network, to have national reference points that deal with such complex and relatively rare conditions, is essential for an effective approach to these types of conditions.

I was skeptical because I initially thought there might not be an opportunity to address the disease scientifically and therefore delve deeper into certain medical topics. I feared it would all end with the life stories of patients describing their illnesses, and that would be the end of it. In reality, the patient's narrative, which is certainly moving, shared with doctors who treat this disease within a scientific context, has also allowed us, doctors, to learn and hear a crucial perspective: how the patient experiences their illness and receives our advice. Adherence to treatment is crucial for these patients, and understanding how they experience their condition is the best way to support them and achieve this adherence. So it's not just a storytelling that could be performed in a theater, but a tool that allows those providing care to learn a new way of being close to the patient. This creates a bond, a crucial alliance in disease management.

We're planning an event for next year based on this one, which will still be a 'hybrid' event: it will have a scientific component and a patient-focused component, to address and replicate exactly what we've done, but in an even more structured way.