Department of Electrical, Computer and Biomedical Engineering, University of Pavia, Italy.
IRCCS Istituti Clinici Scientifici Maugeri, Pavia, Italy.
Brief Bioinform. 2021 Mar 22;22(2):812-822. doi: 10.1093/bib/bbaa418.
The coronavirus disease 2019 (COVID-19) pandemic has clearly shown that major challenges and threats for humankind need to be addressed with global answers and shared decisions. Data and their analytics are crucial components of such decision-making activities. Rather interestingly, one of the most difficult aspects is reusing and sharing of accurate and detailed clinical data collected by Electronic Health Records (EHR), even if these data have a paramount importance. EHR data, in fact, are not only essential for supporting day-by-day activities, but also they can leverage research and support critical decisions about effectiveness of drugs and therapeutic strategies. In this paper, we will concentrate our attention on collaborative data infrastructures to support COVID-19 research and on the open issues of data sharing and data governance that COVID-19 had made emerge. Data interoperability, healthcare processes modelling and representation, shared procedures to deal with different data privacy regulations, and data stewardship and governance are seen as the most important aspects to boost collaborative research. Lessons learned from COVID-19 pandemic can be a strong element to improve international research and our future capability of dealing with fast developing emergencies and needs, which are likely to be more frequent in the future in our connected and intertwined world.
2019 年冠状病毒病(COVID-19)大流行清楚地表明,需要用全球应对措施和共同决策来应对人类的重大挑战和威胁。数据及其分析是此类决策活动的关键组成部分。有趣的是,其中最困难的方面之一是重新使用和共享电子健康记录(EHR)收集的准确和详细的临床数据,即使这些数据具有至关重要的意义。事实上,EHR 数据不仅对于支持日常活动至关重要,而且还可以利用研究并支持有关药物和治疗策略有效性的关键决策。在本文中,我们将集中注意力研究支持 COVID-19 研究的协作数据基础架构,以及 COVID-19 提出的数据共享和数据治理的开放问题。数据互操作性、医疗保健流程建模和表示、处理不同数据隐私法规的共享程序以及数据治理和管理被视为促进协作研究的最重要方面。从 COVID-19 大流行中吸取的经验教训可以成为加强国际研究以及我们未来应对快速发展的紧急情况和需求的能力的重要因素,在我们这个相互关联的世界中,未来可能会更加频繁地出现这种情况。