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.
J Biomed Inform. 2024 Sep;157:104700. doi: 10.1016/j.jbi.2024.104700. Epub 2024 Jul 28.
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.
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.
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.
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.
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.
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。
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。
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。
本研究针对采用 FAIR 原则和数据可发现性为数据中心制定了具体的最佳实践，还提供了对调查研究的概述以及基于类别分析得出的特定档案，考虑了不同类型的数据中心。
研究表明，欧洲相当数量的健康数据中心不完全符合 FAIR 和数据发现原则。然而，研究确定了一些具体的最佳实践，这些实践可以指导新的数据中心遵守这些原则。研究强调了使健康数据管理机制与 FAIR 原则保持一致的重要性，以增强未来 HRIC 中的互操作性和可重用性。
