Organization
Within the domain of health and healthcare there are a large number of data flows with various objectives operational in Belgium administrative data flows data flows that guarantee the continuity of care (patient-related follow-up) or the traceability of a condition medicine or healthcare product. There are also many data collections in the context of epidemiology and quality of care for example. This last group of scientific data collections the so-called registries is characterised by a heterogeneous methodological approach not only in terms of technology (paper fax email web applications batch upload web services) but also with regard to content (different data structures). Furthermore the same data is often requested multiple times from the same data provider. The consequences of this diversity for the providers and collectors of this data include reduced efficiency in the registration and processing of the information (a lot of manual data cleaning retyping and mapping) real privacy risks and the scattered deployment of IT resources and people for the same tasks. Moreover this context is not motivating for the (highly skilled) employees involved in these data collections (both among the data providers and the researchers). Finally this situation leads to a high (direct and indirect) financial commitment on the part of data providers the researchers and their clients. The healthdata.be team opted to align the standardization of these so-called real world data projects with the clinical context (in stead of starting from the research context) and to look for an information architecture that can be technically implemented in the various applications used in the Belgian healthcare landscape. One of the initiatives studied by the healthdata.be team is the “Registration at the source” project of the Dutch University Medical Centers (UMCs) united in the Dutch Federation of University Medical Centers (NFU). Within this initiative which is supported by the National ICT Institute in Healthcare (NICTIZ) it was decided to work together in the field of standardization of healthcare data. The result of this collaboration is a set of so-called “Zorginformatiebouwstenen” (or Clinical Building Blocks). These Dutch Zorginformatiebouwstenen are reviewed and adapted to national landscape by the healthdata.be team and their stakeholders. The result are Clinical Building Blocks which are published on Simplifier as logical models. In a next step the clinical building blocks will be translated into HL7 FHIR R4 compliant profiles and related conformance materials for data collections supported by healthdata.be (Sciensano). All assets will become available on Simplifier.