Incomplete COVID-19 Data: The Curation of Medical Health Data by the Virus Outbreak Data Network-Africa  

作　　者：Mirjam Van Reisen Francisca Onaolapo Oladipo Mouhamed Mpezamihigo Ruduan Plug Mariam Basajja Aliya Aktau Putu Hadi Purnama Jati Reginald Nalugala Sakinat Folorunso Samson Yohannes Amare Ibrahim Abdulahi Oluwole Olumuyiwa Afolabi Ezra Mwesigwa Getu Tadele Taye Abdulahi Kawu Mariem Ghardallou Yan Liang Obinna Osigwe Araya Abrha Medhanyie Munyaradzi Mawere 

机构地区：[1]Leiden University Medical Centre,1310,the Netherlands [2]Leiden University,1310,the Netherlands [3]Tilburg University School of Humanities and Digital Sciences,1310,the Netherlands [4]VODAN-Africa,260101 [5]Kampala International University,P.O.Box 20000,Uganda [6]Federal University Lokoja,Nigeria [7]Central Bureau of Statistics,81119,Indonesia [8]Tangaza University College,P.O.Box 15055,Karen Nairobi Code 00509,Kenya [9]Olabisi Onabanjo University,P.M.B 2002,Ago-Iwoye,Ogun State,Nigeria 120005,Nigeria [10]Mekelle University,P.O.Box 231,Ethiopia [11]Ibrahim Badamasi Babangida University,911101,Nigeria [12]Makerere University,P.O.Box 7062 Kampala,Uganda [13]Universitéde Sousse,4002 Sousse,Tunisia [14]Great Zimbabwe University,P.O.Box 1235 Masvingo,Zimbabwe

出　　处：《Data Intelligence》2022年第4期673-697,1033-1034,1036,1039-1042,1045-1051,1053,共40页数据智能（英文）

基　　金：VODAN-Africa;the Philips Foundation;the Dutch Development Bank FMO;CORDAID;the GO FAIR Foundation for supporting this research

摘　　要：The incompleteness of patient health data is a threat to the management of COVID-19 in Africa and globally.This has become particularly clear with the recent emergence of new variants of concern.The Virus Outbreak Data Network(VODAN)-Africa has studied the curation of patient health data in selected African countries and identified that health information flows often do not involve the use of health data at the point of care,which renders data production largely meaningless to those producing it.This modus operandi leads to disfranchisement over the control of health data,which is extracted to be processed elsewhere.In response to this problem,VODAN-Africa studied whether or not a design that makes local ownership and repositing of data central to the data curation process,would have a greater chance of being adopted.The design team based their work on the legal requirements of the European Union’s General Data Protection Regulation(GDPR);the FAIR Guidelines on curating data as Findable,Accessible(under well-defined conditions),Interoperable and Reusable(FAIR);and national regulations applying in the context where the data is produced.The study concluded that the visiting of data curated as machine actionable and reposited in the locale where the data is produced and renders services has great potential for access to a wider variety of data.A condition of such innovation is that the innovation team is intradisciplinary,involving stakeholders and experts from all of the places where the innovation is designed,and employs a methodology of co-creation and capacity-building.

关 键 词：FAIR Guidelines FAIR Equivalency Federated data Digital health GDPR VODAN-Africa 

分 类 号：TP311.13[自动化与计算机技术—计算机软件与理论] R-05[自动化与计算机技术—计算机科学与技术]