Health information systems in intellectual disability care: towards the re-use of routinely collected data

Summary

A wide variety of health information systems are used in the care for individuals with intellectual disabilities. In these health information systems, much is recorded about the individuals. For example, personal care aides register in an electronic client dossier how the client was doing on that day, but the client also visits a general practitioner or a doctor for the intellectually disabled (ID physician), whom both use another health information system to register their treatment.

All these routinely collected registrations together create a unique and very complete picture about people with intellectual disabilities. Especially when they receive residential care from a care organization, there is a record for almost every day, for their whole life. This routinely collected longitudinal data, therefore, has enormous potential to be re-used for research and to make the care of people with intellectual disabilities better. The objective of this thesis is to propose a framework for a big data system that combines data from different care information systems and facilitates data re-use for analysis.