Data Publication for Personalised Health Data

Abstract:

Health data collected in clinical trials and epidemiological as well as public health studies cannot be freely published, but are valuable datasets whose subsequent use is of high importance for health research. The National Research Data Infrastructure for Personal Health Data (NFDI4Health) aims to promote the publication of such health data without compromising privacy. Based on existing international standards, NFDI4Health has established a generic information model for the description and preservation of high-level metadata describing health-related studies, covering both clinical and epidemiological studies. As an infrastructure for publishing such preservation metadata as well as more detailed representation information of study data (e.g. questionaries and data dictionaries), NFDI4Health has developed the German Central Health Study Hub. Content is either harvested from existing distributed sources or entered directly via a user interface. This metadata makes health studies more discoverable, and researchers can use the published metadata to evaluate the content of data collections, learn about access conditions and how and where to request data access. The goal of NFDI4Health is to establish interoperable and internationally accepted standards and processes for the publication of health data sets to make health data FAIR.

SEEK ID: https://publications.h-its.org/publications/1796

DOI: 10.52825/cordi.v1i.392

Research Groups: Scientific Databases and Visualisation

Publication type: Proceedings

Journal: Proceedings of the Conference on Research Data Infrastructure

Citation: Proc Conf Res Data Infrastr 1

Date Published: 7th Sep 2023

Registered Mode: by DOI

Authors: Juliane Fluck, Martin Golebiewski, Johannes Darms

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Citation
Fluck, J., Golebiewski, M., & Darms, J. (2023). Data Publication for Personalised Health Data. In Proceedings of the Conference on Research Data Infrastructure (Vol. 1). TIB Open Publishing. https://doi.org/10.52825/cordi.v1i.392
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Created: 15th Feb 2024 at 19:01

Last updated: 5th Mar 2024 at 21:25

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