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Proof of Concept and Horizons on Deployment of FAIR Data Points in the COVID-19 Pandemic

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Data Intelligence 2022年第4期4卷 917-937,1045页

作者： Mariam Basajja Marek Suchanek Getu Tadele Taye Samson Yohannes Amare Mutwalibi Nambobi Sakinat Folorunso Ruduan Plug Francisca Oladipo mirjam van reisen Leiden Institute of Advanced Computer Science Leiden1011NCAmsterdamthe Netherlands Faculty of Information Technology(FIT) Czech Technical University15000 PragueCzech Republic Mekelle University P.O.Box 1871 MekelleEthiopia Kampala International University 256Uganda Department of Mathematical Sciences Olabisi Onabanjo UniversityP.M.B 2002Ago-IwoyeOgun State120005 Nigeria Federal University 260101 LokojaNigeria Virus Outbreak Data Network-Africa Tilburg University P.O.Box 901535000the Netherlands Leiden University Medical Centre(LUMC) Leiden University1310 Leidenthe Netherlands

Rapid and effective data sharing is necessary to control disease outbreaks,such as the current coronavirus *** the existence of data sharing agreements,data silos,lack of interoperable data infrastructures,and different institutional jurisdictions hinder data sharing and *** overcome these challenges,the Virus Outbreak Data Network(VODAN)-Africa initiative is championing an approach in which data never leaves the institution where it was generated,but,instead,algorithms can visit the data and query multiple datasets in an automated *** make this possible,FAIR Data Points—distributed data repositories that host machine-actionable data and metadata that adhere to the FAIR Guidelines(that data should be Findable,Accessible,Interoperable and Reusable)—have been deployed in participating institutions using a dockerised bundle of tools called VODAN in a Box(Vi B).Vi B is a set of multiple FAIR-enabling and open-source services with a single goal:to support the gathering of World Health Organization(WHO)electronic case report forms(e CRFs)as FAIR data in a machine-actionable way,but without exposing or transferring the data outside the *** the execution of a proof of concept,Vi B was deployed in Uganda and Leiden *** proof of concept generated a first query which was implemented across two continents.A SWOT(strengths,weaknesses,opportunities and threats)analysis of the architecture was carried out and established the changes needed for specifications and requirements for the future development of the solution.

关键词： Digital health Data in residence FAIR Guidelines Machine-actionable VODAN-Africa

Implementation of FAIR Guidelines in Selected Non-Western Geographies

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Data Intelligence 2022年第4期4卷 747-770,1051,1053页

作者： Yi Lin Putu Hadi Purnama Jati Aliya Aktau Mariem Ghardallou Sara Nodehi mirjam van reisen 无 Leiden Institute of Advanced Computer Science(LIACS) Leiden University2333 CA Leidenthe Netherlands Central Bureau of Statistics 81119Indonesia Badan Pusat Statistik Central JakartaZ05H9A9Indonesia Department of Community Medicine Universitéde Sousse4002 SousseTunisia Faculty of Humanities and Digital Sciences TilburgP.O.Box 901535000the Netherlands Leiden University Medical Centre(LUMC) Leiden University1310 Leidenthe Netherlands

This study provides an analysis of the implementation of FAIR Guidelines in selected non-Western geographies. The analysis was based on a systematic literature review to determine if the findability, accessibility, interoperability, and reusability of data is seen as an issue, if the adoption of the FAIR Guidelines is seen as a solution, and if the climate is conducive to the implementation of the FAIR Guidelines. The results show that the FAIR Guidelines have been discussed in most of the countries studied, which have identified data sharing and the reusability of research data as an issue(e.g., Kazakhstan, Russia, countries in the Middle East), and partially introduced in others(e.g., Indonesia). In Indonesia, a FAIR equivalent system has been introduced, although certain functions need to be added for data to be entirely FAIR. In Japan, both FAIR equivalent systems and FAIR-based systems have been adopted and created, and the acceptance of FAIRbased systems is recommended by the Government of Japan. In a number of African countries, the FAIR Guidelines are in the process of being implemented and the implementation of FAIR is well supported. In conclusion, a window of opportunity for implementing the FAIR Guidelines is open in most of the countries studied, however, more awareness needs to be raised about the benefits of FAIR in Russia and Kazakhstan to place it firmly on the policy agenda.

关键词： FAIR Guidelines FAIR implementation non-Western geographies

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

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Data Intelligence 2022年第4期4卷 673-697,1033-1034,1036,1039-1042,1045-1051,1053页

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 Leiden University Medical Centre 1310the Netherlands Leiden University 1310the Netherlands Tilburg University School of Humanities and Digital Sciences 1310the Netherlands VODAN-Africa 260101 Kampala International University P.O.Box 20000Uganda Federal University Lokoja Nigeria Central Bureau of Statistics 81119Indonesia Tangaza University College P.O.Box 15055Karen Nairobi Code 00509Kenya Olabisi Onabanjo University P.M.B 2002Ago-IwoyeOgun StateNigeria 120005Nigeria Mekelle University P.O.Box 231Ethiopia Ibrahim Badamasi Babangida University 911101Nigeria Makerere University P.O.Box 7062 KampalaUganda Universitéde Sousse 4002 SousseTunisia Great Zimbabwe University P.O.Box 1235 MasvingoZimbabwe

The incompleteness of patient health data is a threat to the management of COVID-19 in Africa and *** has become particularly clear with the recent emergence of new variants of *** 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 *** modus operandi leads to disfranchisement over the control of health data,which is extracted to be processed *** 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 *** 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 *** 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

FAIR Principles:Interpretations and Implementation Considerations

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Data Intelligence 2020年第1期2卷 10-29,293-302,322页

作者： Annika Jacobsen Ricardo de Miranda Azevedo Nick Juty Dominique Batista Simon Coles Ronald Cornet Melanie Courtot Merce Crosas Michel Dumontier Chris T.Evelo Carole Goble Giancarlo Guizzardi Karsten Kryger Hansen Ali Hasnain Kristina Hettne Jaap Heringa Rob W.W.Hooft Melanie Imming Keith G.Jeffery Rajaram Kaliyaperumal Martijn GKersloot Christine R.Kirkpatrick Tobias Kuhn Ignasi Labastida Barbara Magagna PeterMcQuilton Natalie Meyers Annalisa Montesanti mirjam van reisen Philippe Rocca-Serra Robert Pergl Susanna-Assunta Sansone Luiz Olavo Bonino da Silva Santos Juliane Schneider George Strawn Mark Thompson Andra Waagmeester Tobias Weigel Mark D.Wilkinson Egon L.Willighagen Peter Wittenburg Marco Roos Barend Mons Erik Schultes Leiden University Medical Center Leiden2333 ZAThe Netherlands Institute of Data Science Maastricht UniversityUniversiteitssingel 60Maastricht 6229 ERThe Netherlands Department of Computer Science The University of ManchesterOxford RoadManchester M139PLUK Oxford e-Research Centre Department of Engineering SciencesUniversity of OxfordOxford OX13PJUK School of Chemistry Faculty of Engineering and Physical SciencesUniversity of SouthamptonSO171BJUK Amsterdam UMC University of AmsterdamAmsterdam 1000 GGThe Netherlands European Bioinformatics Institute(EMBL-EBI) HinxtonCambridgeCB101SDUK Harvard University CambridgeMassachusetts 02138USA Department of Bioinformatics–BiGCaT NUTRIMMaastricht UniversityMaastricht 6229 ERThe Netherlands Conceptual and Cognitive Modeling Research Group(CORE) Free University of Bozen-BolzanoBolzano 39100Italy Aalborg University Aalborg DK-9220Denmark Insight Centre for Data Analytics National University of Ireland GalwayH91 TK33Ireland Centre for Digital Scholarship Leiden University LibrariesLeiden2333 ZAThe Netherlands Department of Computer Science Vrije Universiteit AmsterdamDe Boelelaan 11051081 HV AmsterdamThe Netherlands Dutch Techcentre for Life Sciences(DTL) UtrechtThe Netherlands SURF Utrecht 3511 EPThe Netherlands Keith G Jeffery Consultants FaringdonUK Castor EDC Paasheuvelweg 25Wing 5D1105 BPAmsterdamThe Netherlands San Diego Supercomputer Center University of California San DiegoLa JollaCalifornia 92093USA Learning and Research Resources Centre(CRAI) Universitat de Barcelona08007 BarcelonaSpain Environment Agency Austria A-1090 ViennaAustria University of Notre Dame 75004 ParisFrance Health Research Board(HRB) Dublin 2DO2 H638Ireland Liacs Institute of Advanced Computer Science Leiden University2311 GJ LeidenThe Netherlands Czech Technical University in Prague Faculty of Information Technology(FIT CTU)16000 Prague 6Czech Republic GO FAIR International Support&Coordination Office(GFISCO) LeidenThe Netherlands Harvard Catalys

The FAIR principles have been widely cited,endorsed and adopted by a broad range of stakeholders since their publication in *** intention,the 15 FAIR guiding principles do not dictate specific technological implementations,but provide guidance for improving Findability,Accessibility,Interoperability and Reusability of digital *** has likely contributed to the broad adoption of the FAIR principles,because individual stakeholder communities can implement their own FAIR ***,it has also resulted in inconsistent interpretations that carry the risk of leading to incompatible ***,while the FAIR principles are formulated on a high level and may be interpreted and implemented in different ways,for true interoperability we need to support convergence in implementation choices that are widely accessible and(re)-*** introduce the concept of FAIR implementation considerations to assist accelerated global participation and convergence towards accessible,robust,widespread and consistent FAIR *** self-identified stakeholder community may either choose to reuse solutions from existing implementations,or when they spot a gap,accept the challenge to create the needed solution,which,ideally,can be used again by other communities in the ***,we provide interpretations and implementation considerations(choices and challenges)for each FAIR principle.

关键词： FAIR guiding principles FAIR implementation FAIR convergence FAIR communities choices and challenges