健康数据中心可发现性和 FAIR 采用的期望。

Desiderata for discoverability and FAIR adoption of health data hubs.

机构信息

Computational Health Informatics Group, Institute of Biomedicine of Seville, IBiS/Virgen del Rocío University Hospital/CSIC/University of Seville, Seville, Spain.

Internal Medicine Department, Virgen del Rocío University Hospital, Faculty of Medicine, University of Seville, Seville, Spain.

出版信息

J Biomed Inform. 2024 Sep;157:104700. doi: 10.1016/j.jbi.2024.104700. Epub 2024 Jul 28.

DOI:10.1016/j.jbi.2024.104700

PMID:39079607

Abstract

BACKGROUND

The future European Health Research and Innovation Cloud (HRIC), as fundamental part of the European Health Data Space (EHDS), will promote the secondary use of data and the capabilities to push the boundaries of health research within an ethical and legally compliant framework that reinforces the trust of patients and citizens.

OBJECTIVE

This study aimed to analyse health data management mechanisms in Europe to determine their alignment with FAIR principles and data discovery generating best. practices for new data hubs joining the HRIC ecosystem. In this line, the compliance of health data hubs with FAIR principles and data discovery were assessed, and a set of best practices for health data hubs was concluded.

METHODS

A survey was conducted in January 2022, involving 99 representative health data hubs from multiple countries, and 42 responses were obtained in June 2022. Stratification methods were employed to cover different levels of granularity. The survey data was analysed to assess compliance with FAIR and data discovery principles. The study started with a general analysis of survey responses, followed by the creation of specific profiles based on three categories: organization type, function, and level of data aggregation.

RESULTS

The study produced specific best practices for data hubs regarding the adoption of FAIR principles and data discoverability. It also provided an overview of the survey study and specific profiles derived from category analysis, considering different types of data hubs.

CONCLUSIONS

The study concluded that a significant number of health data hubs in Europe did not fully comply with FAIR and data discovery principles. However, the study identified specific best practices that can guide new data hubs in adhering to these principles. The study highlighted the importance of aligning health data management mechanisms with FAIR principles to enhance interoperability and reusability in the future HRIC.

摘要

背景

未来的欧洲健康研究与创新云（HRIC）作为欧洲健康数据空间（EHDS）的重要组成部分，将在符合伦理和法律要求的框架内促进数据的二次利用和能力提升，以推动健康研究的边界，从而增强患者和公民的信任。

目的

本研究旨在分析欧洲的健康数据管理机制，以确定其与 FAIR 原则的一致性，并为加入 HRIC 生态系统的新数据中心生成最佳数据发现实践。在此基础上，评估健康数据中心对 FAIR 原则和数据发现的遵守情况，并得出一套健康数据中心的最佳实践。

方法

2022 年 1 月进行了一项调查，涉及来自多个国家的 99 个代表性健康数据中心，2022 年 6 月收到 42 个回复。采用分层方法覆盖不同的粒度级别。对调查数据进行分析，以评估对 FAIR 和数据发现原则的遵守情况。该研究首先对调查回复进行了一般性分析，然后根据组织类型、功能和数据聚合级别创建了特定的档案。