Rare diseases‚ clinical networks in Italy: the today scenario and lessons learnt based on a comparative analysis on the development of regional network‚ configuration

Lucia Ferrara, Valeria D. Tozzi, Angelica Zazzera

Contact: lucia.ferrara@unibocconi.it

Abstract The reorganisation of healthcare services into networks of clinical experts is increasing as a strategy to promote the uptake of evidence-based practice and to improve patient care. The clinical networks are argued to represent a shift away from hierarchical, bureaucratic organisation of healthcare services to one that engages clinicians more in the development of improved models of care, integration of services and multidisciplinary collaboration. Broadly, clinical networks provide a structure for clinicians to work more closely across institutional and professional boundaries. They emerge as a strategic way to allow for continuous working relationships and to focus on the management and inter-organisational coordination of care, fostering integrated service delivery and, thereby improving the quality of and access to care for patients, including those who require coordination of care across a range of settings. With this shared aim, since the late 1990s, clinical networks have been emerged and established in many countries. Some of these networks, as for rare disease networks, have been set up either at the European, national and local level, to improve the care of patients with rare diseases. These networks present considerable differences in terms of governance, management structures and degree of network maturity. Aims As the rare diseases are a public health concern worldwide and a paradigmatic example of the need to establish a clinical network, the paper aimed to provide a comparative analysis of the development of rare diseases’ clinical networks in Italy through the networks’ configurations approach. The configurational approach allows evaluating the clinical networks as a whole against its foundational strategy and attainments. Methodology We employed a multiple case study design based on the comparative analysis of 20 rare disease networks in Italy. The case studies applied mixed methods, with desk collection and semi-structured interviews. The analysis exploited the perspectives of policy and management that drives the clinical governance, therefore, informants included key stakeholders at the national level and leaders of the regional networks at both managerial and clinical level. Based on the configurational approach we developed a framework that aims to highlight and compare 4 dimensions: the network strategy and goals, the network governance, the network contextual characteristics and the network structures. Results The results highlighted the distinctive characteristics and differences of rare diseases' clinical networks in Italy and the implication of the different configurations. They showed also the contradictory development of rare diseases’ networks that exploited the same characteristics and models applied in clinical networks for diseases with a high epidemiology prevalence and belonged to one major medical discipline. Conclusions, therefore, suggest it would be worth of reviewing the rare diseases’ clinical network’s model through different drivers, as for the recognition of multi-disciplinary working, the adoption of clinical networks’ tools for monitoring services and recipients and a stronger governance role, placed at the national level.

← Schedule