Advanced Genetics (Jun 2021)
Design of a FAIR digital data health infrastructure in Africa for COVID‐19 reporting and research
- Mirjam vanReisen,
- Francisca Oladipo,
- Mia Stokmans,
- Mouhamed Mpezamihgo,
- Sakinat Folorunso,
- Erik Schultes,
- Mariam Basajja,
- Aliya Aktau,
- Samson Yohannes Amare,
- Getu Tadele Taye,
- Putu Hadi Purnama Jati,
- Kudakwashe Chindoza,
- Morgane Wirtz,
- Meriem Ghardallou,
- Gertjan vanStam,
- Wondimu Ayele,
- Reginald Nalugala,
- Ibrahim Abdullahi,
- Obinna Osigwe,
- John Graybeal,
- Araya Abrha Medhanyie,
- Abdullahi Abubakar Kawu,
- Fenghong Liu,
- Katy Wolstencroft,
- Erik Flikkenschild,
- Yi Lin,
- Joëlle Stocker,
- Mark A. Musen
Affiliations
- Mirjam vanReisen
- Leiden University Leiden Netherlands
- Francisca Oladipo
- Kampala International University Kampala Uganda
- Mia Stokmans
- Faculty of Humanities and Digital Sciences Tilburg University Tilburg Netherlands
- Mouhamed Mpezamihgo
- Kampala International University Kampala Uganda
- Sakinat Folorunso
- Department of Computer Science Olabisi Onabanjo University Ago Iwoye Nigeria
- Erik Schultes
- Go‐FAIR Foundation Leiden Netherlands
- Mariam Basajja
- Leiden University Leiden Netherlands
- Aliya Aktau
- Faculty of Humanities and Digital Sciences Tilburg University Tilburg Netherlands
- Samson Yohannes Amare
- School of Public Health Mekelle University Mek'ele Ethiopia
- Getu Tadele Taye
- Faculty of Humanities and Digital Sciences Tilburg University Tilburg Netherlands
- Putu Hadi Purnama Jati
- Faculty of Humanities and Digital Sciences Tilburg University Tilburg Netherlands
- Kudakwashe Chindoza
- Faculty of Humanities and Digital Sciences Tilburg University Tilburg Netherlands
- Morgane Wirtz
- Faculty of Humanities and Digital Sciences Tilburg University Tilburg Netherlands
- Meriem Ghardallou
- Department of Community Medicine Université de Sousse Sousse Tunisia
- Gertjan vanStam
- SolidarMed Masvingo Zimbabwe
- Wondimu Ayele
- Department of Biostatistics and Epidemiology, School of Public health College of Health Sciences Addis Ababa University Addis Ababa Ethiopia
- Reginald Nalugala
- Tangaza University College Nairobi Kenya
- Ibrahim Abdullahi
- Ibrahim Badamasi Babangida University Lapai Nigeria
- Obinna Osigwe
- Kampala International University Kampala Uganda
- John Graybeal
- Stanford Center for Biomedical Informatics Research Stanford University Stanford California USA
- Araya Abrha Medhanyie
- Department of Reproductive health, School of Public Health Mekelle University Mek'ele Ethiopia
- Abdullahi Abubakar Kawu
- Ibrahim Badamasi Babangida University Lapai Nigeria
- Fenghong Liu
- Chinese Academy of Science Beijing China
- Katy Wolstencroft
- Leiden University Leiden Netherlands
- Erik Flikkenschild
- Leiden University Medical Centre (LUMC) Leiden University Leiden Netherlands
- Yi Lin
- Leiden University Leiden Netherlands
- Joëlle Stocker
- Department of Geosciences Utrecht University Utrecht Netherlands
- Mark A. Musen
- Stanford Center for Biomedical Informatics Research Stanford University Stanford California USA
- DOI
- https://doi.org/10.1002/ggn2.10050
- Journal volume & issue
-
Vol. 2,
no. 2
pp. n/a – n/a
Abstract
Abstract The limited volume of COVID‐19 data from Africa raises concerns for global genome research, which requires a diversity of genotypes for accurate disease prediction, including on the provenance of the new SARS‐CoV‐2 mutations. The Virus Outbreak Data Network (VODAN)‐Africa studied the possibility of increasing the production of clinical data, finding concerns about data ownership, and the limited use of health data for quality treatment at point of care. To address this, VODAN Africa developed an architecture to record clinical health data and research data collected on the incidence of COVID‐19, producing these as human‐ and machine‐readable data objects in a distributed architecture of locally governed, linked, human‐ and machine‐readable data. This architecture supports analytics at the point of care and—through data visiting, across facilities—for generic analytics. An algorithm was run across FAIR Data Points to visit the distributed data and produce aggregate findings. The FAIR data architecture is deployed in Uganda, Ethiopia, Liberia, Nigeria, Kenya, Somalia, Tanzania, Zimbabwe, and Tunisia.
Keywords
- data science
- ethical
- health information
- knowledge capture
- legal and social implications
- medical informatics