The eHealth Center will lead training and skill-building for this European project targeting 150 members of the European rare diseases networks
The UOC's eHealth Center is taking part in a European project whose goal is to develop clinical practice guidelines (CPG) and clinical decision support tools (CDST) for rare diseases. Coordinated by the Government of Andalusia's Fundación Progreso y Salud (FPS) and funded by the European Commission's Directorate-General for Health, the project targets the 150 health professionals who are members of the European Reference Networks (ERN) for rare diseases, which are diseases that affect few people, and are relatively unstudied and underfunded.
According to Albert Barberà, director of the eHealth Center and the project's principal investigator, "clinical practice guidelines are recommendations addressed to health professionals on how to approach the care and treatment of patients with certain medical conditions". Their rationale is to meet the need for "evidence-based materials that can support health professionals in their professional practice".
The project is divided into four work packages. Through the eHealth Center and with the participation of the Andalusian School of Public Health (EASP), the UOC is coordinating the training and skill-building package. The University's role within this project is to design, develop and impart online training on these CPGs and CDSTs to the members of the participating ERNs.
To undertake this project, the FPS has put together a consortium of partners whose members include the Agency for Health Quality and Assessment of Catalonia (AQuAS), the Andalusian School of Public Health (EASP), the Basque Foundation for Health Innovation and Research (BOIEF), the Aragon Health Sciences Institute (IACS), and the Canary Islands Foundation for Health Research (FIISC), in addition to the UOC.
Bespoke e-learning on rare diseases for the ERNs
This commission to design and develop the training and the learning resources, which will be used to provide online training in writing clinical practice guidelines and tools for rare diseases, comes at a time when, due to the COVID-19 pandemic, the UOC has contributed to helping over 9,000 teachers adapt to remote teaching.
Reflecting this commitment to quality online education, the eHealth Center and the consortium's other members are developing the teaching resources that will be used in the learning process for developing clinical practice guidelines. The course will be run by UOC Corporate.
"Our role at the eHealth Center is to catalyse the UOC's assets, such as e-learning, to develop solutions for medical professionals' needs. In this case, the project has an additional social dimension, as the rare diseases often affect children, with high-impact, debilitating effects and quite a number of deaths," said Barberà.
The eHealth Center is leading the project within the University, with Albert Barberà and Marta Aymerich, UOC Vice President for Strategic Planning and Research, as the principal investigators. The training sessions will begin on 28 April 2021.