2020年10月30日,在奥地利维也纳,在冠状病毒病(COVID-19)爆发期间,一名实验室工作人员在Confidence实验室中研究快速PCR检测样品。REUTERS / Leonhard Foeger

To mitigate the costs of future pandemics, establish a common 资料空间

COVID-19大流行提醒人们注意以下事实:尽管有最佳意图和努力,但全球危机中出现的实时数据可能不确定,迅速发展,不完整甚至会引起误解。 COVID-19传播与症状发作之间的时滞,以及获得测试和接收测试结果之间的时滞,可能导致过时的感染率估算和动态变化的公共卫生指南,从而降低公众的理解和依从性。政府和学术研究人员必须选择是否以及如何更新积压的信息或追溯修正过去的统计数据,这可能会导致政策的改变,逆转或延迟。

在近期爆发期间,包括 2015年埃博拉疫情 以及正在进行中的COVID-19大流行,在公共数据库和数据存储库中共享基因组测序数据,例如 GenBank吉赛德 事实证明,它具有极高的价值,并得到了1996年百慕大原则和2010年名古屋议定书等国际协议的支持。同时,学术界对公共卫生数据共享的兴趣导致了创新的平台, 地图疾病发生, 利用开源和社交媒体情报 关于公共卫生,甚至 众包数据收集。但是,这些努力在全球和国家层面上都是分散的。

Building common 资料空间s to enhance information flows

To improve data sharing during global public health crises, it is time to explore the establishment of a common 资料空间 for highly infectious diseases. Common 资料空间s integrate multiple data sources, enabling a more comprehensive analysis of data based on greater volume, range, 和 access. At its essence, a common 资料空间 is like a public library system, which has collections of different types of resources from books to video games; processes to integrate new resources 和 to borrow resources from other libraries; a catalog system to organize, sort, 和 search through resources; a library card system to manage users 和 authorization; 和 even curated collections or displays that highlight themes among resources.

甚至在COVID-19大流行之前,就已经有了显着的势头,可以更广泛地访问关键数据。在美国,2018年《循证决策基金会法案》第二标题或 OPEN政府资料法,要求联邦机构使用标准化的机器可读数据格式将其信息作为开放数据在线发布。该信息现在可以在联邦政府获得 data.gov 目录,包括50个州或地区级数据中心和47个市或县级数据中心。在欧洲,欧盟委员会 发布了数据策略 in February 2020 that calls for common 资料空间s in nine sectors, including healthcare, shared by EU businesses 和 governments.

Going further, a common 资料空间 could help identify outbreaks 和 accelerate the development of new treatments by compiling line list incidence data, epidemiological information 和 models, genome 和 protein sequencing, testing protocols, results of clinical trials, passive environmental monitoring data, 和 more.

而且,它可以 达成共识和共识 围绕事实-解决政策上国际化的先决条件,以解决COVID-19或未来大流行的独特情况,例如医疗设备和PPE的分销,对旅游业和全球供应链的破坏,社会疏远或检疫,以及大量倒闭业务。

Challenges of establishing a global common 资料空间

Despite these potential advantages, setting up a common 资料空间 that is usable 和 secure is no simple task. Even with widespread consensus within academia on the importance of sharing public health data, there are real-world technical, geopolitical, 和 ethical barriers to implementation on a global scale.

首先是建立一个全面,安全和可用的数据空间系统的技术挑战。集成来自多个数据源的数据可能既耗时又困难,尤其是考虑到数据质量低,数据​​收集方法不同,数据报告滞后以及固有的不确定性。因此,定期审核共享数据空间中的数据(标记不良数据质量和过时的信息)以传达数据的置信度或不确定性水平非常重要。另外,小说“data space”这些方法可以帮助避免事前清理,处理和集成数据的高昂前期成本,而新兴的AI和ML算法以及数据标准可以自动提供基本功能,从而使研究人员可以将精力集中在高级集成上。区块链的应用可以提高系统的安全性和弹性,以防止意外或恶意数据损坏。

On the geopolitical front, issues of data protectionism, national security, economic competition, lack of trust, 和 differing privacy regulations 和 values impede the development of an international common 资料空间. Pre-print publication policies have helped incentivize data sharing 和 reduce academic concerns about IP, data ownership, 和 publication rights—yet there 仍然有差距 将学术研究成果转化为政策制定者和普通大众。过去,流行病学预测模型,风险图和灾难规划模拟的交换 帮助研究人员 在应对未来不确定性和利益相关者复杂性高企的同时,了解特定于国家的问题。

Underlying these geopolitical issues are ethical questions about data access, equity, 和 privacy. For instance, how can we ensure that the costs 和 benefits of a common 资料空间 are fairly distributed? It will become necessary to fill gaps in disease detection in under-resourced areas, while simultaneously 确保公平和负担得起的访问 to resulting medicines 和 treatments among communities that contribute data. On the other hand, it is essential to consider how to address “free riding” nations which can benefit from a common 资料空间 without sharing their own data. We must also question how to 处理所有权和归属 当研究人员共享数据时,什么道德研究和问责标准是必要的,在什么情况下需要研究参与者的知情同意,以及如何在公共卫生紧急情况下提供可广泛访问的数据,同时保持所有相关人员的隐私。

With these considerations in mind, the question then turns to whether a national or regional system of data sharing is the most realistic goal—or whether it is possible to achieve a truly global system of common data sharing. Paradoxically, a common 资料空间 may help increase international trust 和 cooperation during future pandemics—but cannot be enacted without some baseline level of international trust 和 cooperation.