Design organization and clinical processes around patient characteristics: Evidence from a multiple case study of Hemophilia

Background: There is growing evidence of the relevance of designing organization of care around patient characteristics; this is especially true in the case of complex chronic diseases. Purpose: The goal of the paper - that focuses on the analysis of the clinical condition hemophilia in three different centers - is to address two different research questions:1. How can we define, within the same clinical condition, different patient profiles homogeneous in terms of intensity of service required (e.g. number of visits or diagnostics)? 2. What are the conditions to re-organize care around these patient profiles in a multidisciplinary and coordinated manner? Research design: The authors have used a multiple case study approach combining both qualitative and quantitative methodologies; in particularly the semi-structured interviews and the direct observation were aimed to map the process in order to come up with an estimate of the cost of the full cycle of care. Study sample: The research methodology has been applied consistently in three different centers. The selection of the structures has been based on two main different criteria: (i) high standards regarding both organizational and clinical aspects and (ii) willingness from management, nurses and physicians to provide data. Results: The study clearly shows that different patient profiles - within the same clinical condition - trigger a different set of diagnostic and therapeutic activities. It is, thus, important considering patient characteristics in the development and implementation of clinical pathways and this will imply relevant differences in terms of organizational and economic impact. Conclusions: These process-based analyses are very much critical especially if we want to move to a bundled and integrated payment system but, as shown by this study itself, require a lot of time and efforts since our healthcare information systems are still fragmented and vertically designed.