The Role of the Ict in Process Monitoring and System Impact Assessment of Rare Disease Collaborative Networks

Abstract

Rare cancers represent about 20% of the total number of cancers diagnosed in Europe, with an occurrence of less than 6 per 100.000 individuals annually. Despite the impact of each rare disease is limited, rare diseases collectively are a true challenge for public health authorities. In particular, rare cancers face specific challenges that include late/incorrect diagnosis and lack of clinical expertise. In this context, rare cancers networks play a central role in linking national designed centres of expertise far from each other. These collaborations among clinical centres aim to improve the care quality of rare cancers in terms of patients' survival and of life quality. Moreover, the presence of a national collaborative network should induce a reduction of health migration and social costs. To foster these networks, it is important to use ICT solutions not only to support network collaborative processes, but also to monitor the overall collaboration process and to assess the related system impact. This paper describes the project "Italian Rare Cancer Network -Process Monitoring and System Impact Assessment" that aims to strengthen the collaborative Italian network Rete Tumori Rari (RTR) developing its quality system through an information system. The project results can be used as input for the definition of the organizational model and of the information system of the new Italian network of rare tumours (Rete Nazionale Tumori Rari) and to strengthen Italy