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EOSC-Life Report on data standards for observational and interventional studies, and interoperability between healthcare and research data

Canham, Steve; Ohmann, Christian; Boiten, Jan-Willem; Panagiotopoulou, Maria; Hughes, Nigel; David, Romain; Sanchez Pla, Alex; Maxwell, Lauren; Aerts, Jozef; Facile, Rhonda; Griffon, Nicolas; Saunders, Gary; van Bochove, Kees; Ewbank, Jonathan

The scope of the report is discussed, and clarified as an examination of data standards and the interoperability of data both within and between healthcare data (including that used for observational research) and interventional research data (largely from clinical trials).

The data standards in use within healthcare data are examined from the perspectives of outcome measures, syntactic and transport standards, semantic standards and metadata standards. The same is then done for standards within interventional research.

The practicalities of interoperability, in particular with respect to making healthcare data more like interventional research data, are explored – again under the headings of outcome measures, syntactic and transport standards, semantic standards and metadata standards.

The major finding is of a current semantic incompatibility between healthcare and interventional research data standards – i.e. they tend to use different vocabularies and concepts.

A conclusion summarises the report’s findings and discusses possible actions to improve data interoperability in the short, medium and long term.

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