Patient Engagement Networking Event Milan 2024

We are happy to share some insights from our Patient Engagement Networking Event in Milan, organized by admedicum together with Io Sono Ancora Vivo (ISAV), l'Unione Trapiantati Polmone Padova ODV and Patient Expert Academy EUPATI Italy. We would also like to thank Sobi - Swedish Orphan Biovitrum AB for their financial support of this event.

It was a remarkable gathering of Italian patient advocates and industry representatives who discussed the need for psychological support for people living with a chronic disease and their caregivers, and how psychological support can improve their quality of life. Another important discussion developed around the role of patient experts in the development of medicines and services. While industry seems to be increasingly demanding patient experts as partners, patient experts are struggling to establish themselves as respected and equal partners in the medical field/among HCPs.

Lorenzo D'Andrea, co-founder and president of Io Sono Anora Vivo (ISAV) (which translates to "I am still alive"), shared his experience in supporting patients with amyotrophic lateral sclerosis (ALS) and their caregivers. In addition to services such as organizational or logistical support (e.g. transportation), psychological counseling, both individual and group, is an important part of ISAV's portfolio. Interestingly, Lorenzo is also the founder of Radio ISAV, which is primarily a benefit corporation in that all operating profits are allocated to ISAV to support the children of ALS patients in their studies.

Dr. Marco Sangiovanni, who works as a psychologist with patients who are about to receive or have received a lung transplant, emphasized the need for holistic psychological support for patients with diseases such as idiopathic pulmonary fibrosis, where loss of autonomy and fear of the future are prevalent. When patients are on a waiting list for a lung transplant, they experience a roller coaster ride of desire and fear for the future. Supporting patients and caregivers at this moment in the patient journey requires a deep understanding of patients' needs and their feelings of helplessness.

Gabriella Carmen Scatigno from Dompé presented key elements of her patient support program for people with pulmonary hypertension. The emotional burden, the complexity of symptoms and therapy, and the need for an integrated approach involving patients, caregivers, and specialists from different disciplines and levels of expertise make the management of the disease quite challenging. In addition, the very fact that it is a rare disease adds to the challenge and requires a patient-centered support program in order to fully benefit from the therapy.

Carla Rapaccioli of SOBI highlighted the company's commitment to rare diseases, with a focus on access to innovative therapies and strong partnerships across the healthcare ecosystem. She presented the Blood Inclusivity Campaign, an initiative to promote equity in healthcare by ensuring that all patients with blood-related diseases have access to the same quality of care.

Silvia Starita from EUPATI Italy highlighted the importance of patient involvement in clinical research and presented the Academy's study program for patient representatives to become patient experts.

Paola Kruger and Daniela Cavallaro are both EUPATI Fellows and shared how the EUPATI program has enabled them to better contribute to the development of clinical trial protocols, ensuring patient-relevant and acceptable designs and facilitating recruitment.

This event highlighted the critical need for continued dialogue and collaboration between patients and industry, not only in Italy, but globally. The shared experiences, innovative approaches and heartfelt discussions have highlighted the way forward, where patient voices are not only heard, but are integral to the development and implementation of healthcare solutions. Let us continue this momentum by fostering partnerships that prioritize patient-centered care and ultimately improve the lives of people living with chronic conditions and their caregivers.

Together, we can build a future where patient engagement is the cornerstone of healthcare innovation and excellence.