ÚNICAS is part of the Ministry of Health’s Personalized Digital Care Plan, which has a budget of €146 million, of which €19.5 million have been allocated to the first phase of developing the ÚNICAS platform for paediatric patients in Spain.
It aims to promote collaboration between centres across the country through a virtual platform that facilitates the secure exchange of clinical information and coordinated work among experts in RD from multiple centres nationwide. With the principle of “moving data, not patients”, the initiative helps to speed up diagnoses, improve clinical monitoring and promote specialized, personalized and equitable care for all patients with RD.
Catalonia is the only region that is rolling out the connection to the ÚNICAS platform in a coordinated manner to the accredited centres of the Networks of Clinical Expertise Units (Xarxes d’Unitats d’Expertesa Clínica, XUEC) in RD that treat both paediatric and adult patients. This move anticipates the second phase of the project at a national level, in which centres for adults will be incorporated.
Digital advances for ÚNICAS at the Clínic
The implementation of this project at the Hospital, led by Laura Pradal and Maribel Grau from the Clínic’s Information Systems Directorate, received a grant of €533,000 from the €2,300,000 of Next Generation EU funds, allocated by CatSalut to SISCAT hospitals accredited as XUEC.
The connection to ÚNICAS has already led to significant improvements in the Hospital’s information systems. Among the actions implemented is the creation of a new view within the clinical history that will allow access, with a single click, to all patients with RD. In parallel, the Hospital has implemented the classification of RD with a specific identifier and ORPHA coding for each RD, in accordance with the requirements of European registries and guidelines.
Professionals will have direct access to the ÚNICAS platform to consult the information shared by the different centres treating the patient, improving continuity of care and coordination between hospitals. Soon, the automatic detection of registered patients will allow the teams involved to have this information in real time. Progress is also being made on developing new features that will enable patients to be registered directly on the ÚNICAS platform and share relevant clinical information, as well as on implementing specific digital informed consent for patients with RD.
Clínic Rare Diseases (RD) Programme and accredited units: a model for ÚNICAS
The Hospital Clínic Barcelona has an extensive track record in caring for RD, and holds a leading position both nationally and internationally in this field, as it has a high level of institutional recognition with 37 accreditations for RD alone: 9 Clinical Expertise Unit Networks (XUEC) in Catalonia, 17 Reference Centres, Departments and Units (CSUR) at a national level, and 11 European Reference Networks (ERN) at a European level.
The Clínic also has its own cross-cutting and multidisciplinary structure, the HCB’s Clínic RD Programme, which, with the support of the Medical Directorate, supports expert units and promotes clinical coordination, research and innovation in this field. Aligned with the strategies of CatSalut, the Ministry of Health and the European RD networks, the Programme promotes the recognition of new units, the improvement of resources and the integration of data, with the aim of optimizing diagnosis, monitoring and quality of life for patients.
The coordinators of the accredited networks and the rest of the members of the Clínic RD Programme work to ensure excellent care and to promote continuous improvements that facilitate an increasingly efficient response to the growing number of patients treated at the Hospital.
The Clínic’s involvement in the ÚNICAS project is being coordinated by the Clínic RD Programme, where two of its members are participating as ambassadors for the project: Dr José Hernández-Rodríguez, the programme coordinator, and Dr Rita Reig, from the Quality Directorate and the programme secretary Through this work, the Clínic RD Programme helps strengthen the Hospital Clínic’s strategic positioning within the new national network.
