Towards an Interoperability Landscape for a National Research Data Infrastructure for Personal Health Data
The German initiative “National Research Data Infrastructure for Personal Health Data” (NFDI4Health) focuses on research data management aspects in health research. Among other goals, it aims to foster and develop harmonized informatics standards for public health, epidemiological studies, and clinical trials and to facilitate the access to and availability of relevant data and metadata standards. This publication provides a non-exhaustive list of syntactic and semantic data standards of potential use for NFDI4Health and beyond. The list was created based on interdisciplinary meetings and workshops within the NFDI4Health community, mappings of study questionnaires and the NFDI4Health metadata schema as well as a literature search. Included are five syntactic, 32 semantic and eleven combined syntactic and semantic standards. In addition, 101 ISO Standards from ISO/TC 215 Health Informatics and ISO/TC 276 Biotechnology could be identified as being potentially relevant. This work focuses on the utilization of standards for epidemiological and health research data ensuring interoperability as well as the compatibility to NFDI4Health, its use cases, and to (inter-)national efforts within these sectors. The goal is to foster collaborative and inter-sectoral work in health research and initiate a debate around the potential of using common standards.
Additional File 1: Definitions of terms used in this manuscript
Additional File 2: All identified NFDI4Health relevant ISO Standards from ISO/TC 215