The first UNICAS project co-creation workshop on rare paediatric diseases is successfully carried out

More than 50 professionals in the field of ICT in health from all around Spain took part in the UNICAS project workshop on 5 October at the Thirtieth National Information and Health Conference in Andalusia, held by the Spanish Informatics Society (SEIS) in Torremolinos, Malaga. The session coordinated by Carlos Gallego, the Director of Digital Transformation at the TIC Salut Social Foundation and Miguel Ángel Montero, the head of the health division of Inetum, allowed progress to be made in the co-creation of a map of the existing digital assets in the sector.

UNICAS is a Ministry of Health project included in the Recovery, Transformation and Resilience Plan, financed by NextGenerationEU funds. Its goal is to create an ecosystem of alliances to improve the National Health Service’s response to patients with complex rare diseases throughout their care process. To achieve this goal, a federated health care network will be created, with at least one node in each autonomous community, to meet the needs of patients, carers and professionals.

Technological part of the UNICAS project

Catalonia is leading the design, development and technological integration of the project, and the TIC Salut Social Foundation is in charge of carrying out these actions. At the workshop in Torremolinos, there was a session on UNICAS’s technological vision led by Carlos Gallego, and another on co-creation of technological solutions for Personalised Digital Care led by Núria Abdón,the Head of Personalised Digital Care at the TIC Salut Social Foundation, and Miguel Ángel Montero.

During the participatory session, stress was put on the participants’ commitment to follow unified standards to implement the network’s services: BPMN to manage processes and HL7 FHIR to process data. Participants were warned of the risks associated with governance, interoperability and data processing in the project. The project’s next steps in the technological field were also discussed. These have already begun with a round of specialised sessions with representatives from the sector in a process to compile competitive products, or benchmarking, making it possible to enrich the map of existing digital assets in the sector.

Apart from the entire technological part, the project’s care vision was also shared at the workshop by Manel del Castillo, the General Manager of Sant Joan de Déu Hospital in Barcelona; and its management and governance model was set out by María Fe Lapeña, the Deputy Director of Digital Health Services.

Rare diseases in the UNICAS project

The UNICAS project is initially focusing on four types of rare paediatric diseases: mitochondrial diseases, neuromuscular disorders, epileptic encephalopathies and neurodevelopmental disorders. The project envisages that by establishing an integrated care network aimed at this group of patients, it will be the clinical information rather than the patients that move around. This, among other aspects, will contribute to improving diagnosis time, fairness and accessibility to the system.

As Manel del Castillo explained in his talk, it is estimated that rare diseases affect 5 cases per 10,000 inhabitants and represent a high burden of morbidity and a high cost to the health care system. He also said that affected families tend to feel isolated and lack tools to care for patients. They perceive a lack of care coordination. It takes up to four years on average to receive a diagnosis (and it is estimated that 50 per cent remain undiagnosed). And they have difficulty accessing centres that specialise in rare diseases, which forces them to move home.