Patients and their families play a key role in hospital transformation models. For this reason, understanding their needs is essential to generate an optimal care model. As part of the 10th XPatient Barcelona 2025 Congress, Parc Taulí hosted the satellite session “The patient experience in addressing rare diseases”.
Dr. Ana Martí, Director of Strategy and Quality at Parc Taulí, began the session by highlighting the importance of citizen participation in the healthcare world. “When institutions guarantee spaces for dialogue with patients, we can devise initiatives that seek concrete improvements”, explained Dr. Martí. Subsequently, the head of Patient Experience and Citizen Participation, Mr. Víctor Vergés, stated that the Patient Experience Unit is working to improve the channels and avenues for citizen participation.
Afterwards, Dr. Víctor Manuel Martínez, director of the Genomic Medicine Center at Parc Taulí, gave an introduction to rare diseases, the Clinical Expertise Units (UEC) and outlined the different challenges that the health and social system faces in ensuring a global approach to these diseases."We are on the right track, but we need to advance in research, digitalization and interoperability, among others", said Dr. Martínez.
Subsequently, Mr. Francesc Durán, administrative manager of Parc Taulí, presented the liaison office. This is a single window for input and output of information on everything related to rare diseases that aims to streamline procedures, resolve doubts, avoid duplicate tests or visits and ensure that the entire patient care circuit functions without incidents. This space has two administrative case managers specialized in pediatric and adult rare diseases.
In addition, Mr. Marcos Séneca, technician from the Patient Experience Unit at Parc Taulí, has presented different ways of citizen participation that are carried out at Parc Taulí.
Next, Dr. Josefa Rivera, Director of Teaching at Parc Taulí with a long career in the management of rare diseases at the hospital, presented how the healthcare system has advanced in the care of patients with these diseases.
Finally, Dr. Rivera moderated a panel discussion between patients and family members with rare diseases in which they shared their experiences and perceptions about addressing the diseases.
