Catalan Health Services (CatSalut), Barcelona, Spain
Dr. Roser Francisco is a registered nurse and a biologist, and has completed her PhD on Biomedicine from the University of Barcelona. She is the Head of the rare diseases program of the Catalan Health Servicie (CatSalut), a public health administration. Her work has always been related to rare disesases, from research to health planning. Thanks to her experience she has an holistic knowledge of RD’s needs: doctoral thesis on the rare paediatric oncologic disease neuroblastoma, advice and monitoring of clinical trials in rare diseases, participation in the wording and implementation of the Catalan RD’s Care Model.
People living with rare diseases (RD) are vulnerable to healthcare systems because standard procedures are not adequate for these patients. Catalonia’s Health Ministry has been working since 2009 on different health policies that seek to improve awareness, diagnosis and treatment of people affected by RD.
One of these policies defines the Catalan RD Care Model. This model aims to achieve a person-centred care and to guarantee equity of access to speciealized care; it integrates the different patient care levels and optimizes the resources available by identifying and guaranteeing the access to clinical reference units (UEC) which are responsable for leading an integrated care network in collaboration with the territorial/community level (the one close to the home of the patient: includes primary healthcare, territorial hospitals and other health services as well as social, educational and labour resources). The integrated care network implies a collaborative attitude and depends largely on eHealth tools usage.
The model has been designed with the advice of a RD Advisory Committee (CAMM) and takes into account the viewpoint of patients, clinicians and professionals of different administration bodies (health, welfare and education). Furthermore it is aligned with the RD national and European strategies (Estrategia nacional de Enfermedades raras and European Reference Networks -ERNs-).
The model implementation process has been designed by phases; RDs are grouped in thematic groups (similar to ERN grouping) which are priorized and worked in collaboration with professional experts of our territory. In 2017, the first catalan network was designated, it addresses genetic cognitive behavioural diseases. At least two more networks will be designated during 2018.