Management and Data Sharing of COVID-19 Pandemic Information

Abstract

The coronavirus disease 2019 (COVID-19) is an ongoing global pandemic caused by severe acute respiratory syndrome coronavirus 2. During the past 10 months, COVID-19 has killed over 1 million people worldwide. Under this global crisis, data sharing and management of the COVID-19 information are urgently needed and critical for researchers, epidemiologists, physicians, bioengineers, funding agencies, and governments to work together in developing new vaccines, drugs, methods, therapeutics, and strategies for the prevention and treatment of this deadly and rapidly spreading disease. The COVID-19 pandemic information includes the database of COVID-19-patient biospecimen resources in hospitals or biorepositories, electronic patient health records, ongoing clinical trials and research results on this disease, policies, guidelines, and regulations related to COVID-19, and the COVID-19 outbreak tracking records, and so on. A study of the current management and data-sharing approaches, tools, software, network, and internet systems developed in the United States is conducted in this article. Based on this study, it is revealed that the existing data-sharing and management systems are facing many big challenges and problems associated with data decentralization, inconsistencies, security and legal issues, limited financial support, international communications, standardization, and globalization. To overcome and solve these problems, several integrated platform models for national and international data-sharing and management are developed and proposed in this article to meet the unprecedented need and demand for COVID-19 pandemic information sharing and research worldwide.

Jordanian views regarding sharing of medical data for research: A cross-sectional study during COVID-19 pandemic

“…Sharing of biomedical data has been shown to improve population health and save lives [ 1 ], especially during health crises such as the current COVID-19 pandemic [ 6 , 7 ]. Despite the tremendous amount of research done on the public´s opinion regarding sharing of medical information, the issue of who owns the data is still controversial and there is no consensus on who is the actual owner of that data [ 25 ].…”

“…Sharing of medical records continues to lead to an exciting range of health-related discoveries, improving population health and saving lives [ 1 ]. During pandemics such as the current COVID-19, rapid data sharing regarding infection duration, method of transmission, severity, age groups at risk, comorbidities, clinical data and management can maximize the utility of data and seems especially urgent and warranted [ 5 ], and becomes a moral obligation to save lives and provide solutions to end the pandemic[ 6 , 7 ].…”

Barriers to Dissemination of Local Health Data Faced by US State Agencies: Survey Study of Behavioral Risk Factor Surveillance System Coordinators

“…In summary, it is important to design systems that facilitate access to local health data; these data provide information regarding health challenges at the subpopulation level, which will ultimately help guide future public health research. These problems have been at the forefront during the COVID-19 pandemic [ 33 , 34 ] and should be urgently addressed moving forward.…”

Pandemic Analytics: How Countries are Leveraging Big Data Analytics and Artificial Intelligence to Fight COVID-19?

“…The primary challenge these organizations faced was consolidation of the data that differed in its characteristic and extent [163]. Other problems that hampered effective data exchange include legal issues, limited financial support and international communication [169]. On the other hand, some of the organizations and research communities created integrated platform models and open-source structures to enable frictionless data sharing resulting in extensive amount of research and therapeutic data [169].…”