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 Dat...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.展开更多
This study explored the regulatory framework in Kenya that may facilitate the implementation of the FAIR Guidelines in health research, as well as the possibility of adopting the FAIR Guidelines at the national level....This study explored the regulatory framework in Kenya that may facilitate the implementation of the FAIR Guidelines in health research, as well as the possibility of adopting the FAIR Guidelines at the national level. Fourteen key documents pivotal to the emerging digital health sector in Kenya were identified and analysed using a comprehensive coding and labelling approach based on a binary system for whether or not they mention the FAIR Guidelines or terms and vocabulary related to the FAIR Guidelines. The analysis revealed gaps in data stewardship that could be filled by the implementation of the FAIR Guidelines and, although the documents analysed do not explicitly mention the FAIR Guidelines, FAIR Equivalent terminology and practices are mentioned in varying detail. However, our analysis shows that there are still no provisions for the introduction and implementation of the FAIR Guidelines in health research in Kenya. Therefore, we recommend that the leadership be provided with a comprehensive introduction to the FAIR Guidelines, success stories about the FAIRification of data and research infrastructure in other parts of the world, and a demonstration of the steps needed for the FAIRification of health data in Kenya.展开更多
基金VODAN-Africathe Philips Foundation+2 种基金the Dutch Development Bank FMOCORDAIDthe GO FAIR Foundation for supporting this research
文摘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.
基金VODAN-Africathe Philips Foundation+2 种基金the Dutch Development Bank FMOCORDAIDthe GO FAIR Foundation for supporting this research
文摘This study explored the regulatory framework in Kenya that may facilitate the implementation of the FAIR Guidelines in health research, as well as the possibility of adopting the FAIR Guidelines at the national level. Fourteen key documents pivotal to the emerging digital health sector in Kenya were identified and analysed using a comprehensive coding and labelling approach based on a binary system for whether or not they mention the FAIR Guidelines or terms and vocabulary related to the FAIR Guidelines. The analysis revealed gaps in data stewardship that could be filled by the implementation of the FAIR Guidelines and, although the documents analysed do not explicitly mention the FAIR Guidelines, FAIR Equivalent terminology and practices are mentioned in varying detail. However, our analysis shows that there are still no provisions for the introduction and implementation of the FAIR Guidelines in health research in Kenya. Therefore, we recommend that the leadership be provided with a comprehensive introduction to the FAIR Guidelines, success stories about the FAIRification of data and research infrastructure in other parts of the world, and a demonstration of the steps needed for the FAIRification of health data in Kenya.
