论文标题
COVID-19：对大流行期间病原体相关数据共享的连续系统障碍的探索
COVID-19: An exploration of consecutive systemic barriers to pathogen-related data sharing during a pandemic
论文作者
论文摘要
在2020年，Covid-19的大流行导致了全世界政府和研究人员的迅速反应。截至2023年底，由于19日期，超过数百万人死亡，许多Covid-19幸存者在生病后几周，几个月或几年都经历了长期影响。尽管造成了惊人的损失，但与流行病相关的数据的人通常会面临访问，共享或重新使用此数据的严重全身障碍。在本文中，我们报告了一项研究的结果，我们采访了与COVID-19相关数据类型的数据专业人员，包括社交媒体，流动性，病毒基因组，测试，感染，医院入院和死亡。这些数据类型可用于大流行扩散建模，医疗保健系统应变意识以及为COVID-19的治疗治疗设计。数据访问，共享和重复使用的障碍包括访问数据的成本（主要是某些医疗保健来源和手机载体中的医疗保健来源和流动性数据），人类吞吐量瓶颈，不清楚要求访问数据的途径，不必要的严格访问控制和数据重新使用策略，不明确的数据，不明确的数据源具，无法链接出更多的数据来链接，以链接一定的数据源，而不是完整的图像，并且范围内的数据范围却不完整。计算机适合数据格式。
In 2020, the COVID-19 pandemic resulted in a rapid response from governments and researchers worldwide. As of late 2023, over millions have died as a result of COVID-19, with many COVID-19 survivors going on to experience long-term effects weeks, months, or years after their illness. Despite this staggering toll, those who work with pandemic-relevant data often face significant systemic barriers to accessing, sharing or re-using this data. In this paper we report results of a study, where we interviewed data professionals working with COVID-19-relevant data types including social media, mobility, viral genome, testing, infection, hospital admission, and deaths. These data types are variously used for pandemic spread modelling, healthcare system strain awareness, and devising therapeutic treatments for COVID-19. Barriers to data access, sharing and re-use include the cost of access to data (primarily certain healthcare sources and mobility data from mobile phone carriers), human throughput bottlenecks, unclear pathways to request access to data, unnecessarily strict access controls and data re-use policies, unclear data provenance, inability to link separate data sources that could collectively create a more complete picture, poor adherence to metadata standards, and a lack of computer-suitable data formats.
