Challenges in Health Information Systems: Health Data Management and Access for Life Sciences Research

Making the best use of health data is both the main challenge and the main opportunity for cutting-edge research in the Life Sciences sector. This paper examines the main difficulties and hindrances that Life Sciences researchers encounter to access, process, and analyse health data for secondary use by drawing on the case of Human Technopole, a new international research institute established in Milan. While focusing on the critical aspects of the Italian National Health System (Sistema Sanitario Nazionale - SSN) health data management and the consequences on lack of access for research purposes, the paper also presents an ongoing experimental UK project as well as an already implemented programme for managing and accessing demographical and registry data in Italy, to provide insights for possible future solutions.