A health information systems architecture study in intellectual disability care: Commonalities and variabilities

Care providers in intellectual disability care use various health information systems (HIS) to document the care they provide. This generates a substantial amount of structured and unstructured data with significant potential for reuse, which is currently underexploited. To enhance data reuse, it is important to understand the architecture of health information systems in intellectual disability care, including their commonalities and variabilities (differences), as well as to identify related privacy and security issues. Our study adopts a multiple-case study approach, examining the architectures of four health information systems in the Netherlands. We conducted interviews with seven stakeholders from four HISs and reviewed multiple documents concerning system infrastructure. We identified commonalities and differences between these systems and outlined the primary challenges regarding privacy and security for data reuse. For each HIS, four architectural views were developed: a context diagram, decomposition view, layered view, and deployment view. The study discusses crucial security and privacy aspects for data reuse in intellectual disability care and highlights several challenges that must be addressed to unlock the full potential of this data. This research provides initial guidelines for overcoming these challenges.