Patients for Patient Safety in the Context of Rare Diseases

Background : The active involvement of patients and their families in patient safety is essential in healthcare systems. Citizen Science can be useful for this purpose, especially for rare diseases, by gathering data and contributions from patients to design safer environments. The aim of this study was to understand perceptions of critical safety elements in the context of rare diseases, along with facilitators and barriers to patient involvement in patient safety. Results : Three focus groups were held with 12 patients and 18 family members, along with 9 interviews with caregivers and individuals with rare diseases, between May and June 2024. Results were categorized into three main groups: critical elements, barriers, and facilitators of patient safety. Key elements identified for safety included effective coordination and communication. A main barrier was the lack of social skills and empathy from some healthcare professionals. The primary facilitator was social support, which promotes the active involvement of patients in their own safety. The importance of developing a reporting system that enables patients and caregivers to effectively exchange valuable information was highlighted. Conclusions : Coordination, empathy from healthcare personnel, and social support are key aspects of safety. This study demonstrates the usefulness of employing a methodology based on Citizen Science principles, incorporating new elements such as the role of Peer Researchers.