Finalist
Living Well with Fabry: Shared Decision-Making Toolkit
Summary of work
From July 2023 to June 2024, we worked with patients and healthcare professionals to develop the ”Living Well With Fabry: Shared Decision-Making Toolkit,” a resource designed to empower Fabry disease patients and their specialist healthcare professionals (HCPs) in shared decision-making (SDM). Fabry disease is a rare genetic disorder that poses significant management challenges due to its multisystem involvement and diverse range of symptoms, such as pain, fatigue, gastrointestinal issues, and cardiac complications. Our toolkit, co-created with patients, clinicians, and an advocacy group, directly addresses these challenges by fostering informed, patient-centred discussions. It focuses on key symptoms that most impact patients’ lives, ensuring care decisions align with individual preferences and clinical evidence. The initiative highlights our commitment to patient-centric innovation by bridging communication gaps between patients and HCPs, enhancing understanding, and supporting better health outcomes. By integrating continuous feedback from stakeholders, the toolkit provides a practical framework for SDM, empowering Fabry patients to actively participate in their care decisions. We believe that this approach exemplifies our leadership in advancing personalised care for rare diseases, aiming to optimise both patient experience and clinical outcomes.
Judges’ comments
The judges like the tangibility of outcomes in Chiesi’s entry. They recognised the challenges faced by patients with rare diseases and focused on the patient centricity. They had good engagement and shared the decision making. Overall, a great idea, with good objectives.
