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Considerations for an integrated population health databank in Africa: lessons from global best practices

Background: The rising digitisation and proliferation of data sources and repositories cannot be ignored. This trend expands opportunities to integrate and share population health data. Such platforms have many benefits, including the potential to efficiently translate information arising from such...

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Autores principales: Igumbor, Jude O., Bosire, Edna N., Vicente-Crespo, Marta, Igumbor, Ehimario U., Olalekan, Uthman A., Chirwa, Tobias F., Kinyanjui, Sam M., Kyobutungi, Catherine, Fonn, Sharon
Formato: Online Artículo Texto
Lenguaje:English
Publicado: F1000 Research Limited 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8844538/
https://www.ncbi.nlm.nih.gov/pubmed/35224211
http://dx.doi.org/10.12688/wellcomeopenres.17000.1
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author Igumbor, Jude O.
Bosire, Edna N.
Vicente-Crespo, Marta
Igumbor, Ehimario U.
Olalekan, Uthman A.
Chirwa, Tobias F.
Kinyanjui, Sam M.
Kyobutungi, Catherine
Fonn, Sharon
author_facet Igumbor, Jude O.
Bosire, Edna N.
Vicente-Crespo, Marta
Igumbor, Ehimario U.
Olalekan, Uthman A.
Chirwa, Tobias F.
Kinyanjui, Sam M.
Kyobutungi, Catherine
Fonn, Sharon
author_sort Igumbor, Jude O.
collection PubMed
description Background: The rising digitisation and proliferation of data sources and repositories cannot be ignored. This trend expands opportunities to integrate and share population health data. Such platforms have many benefits, including the potential to efficiently translate information arising from such data to evidence needed to address complex global health challenges. There are pockets of quality data on the continent that may benefit from greater integration. Integration of data sources is however under-explored in Africa. The aim of this article is to identify the requirements and provide practical recommendations for developing a multi-consortia public and population health data-sharing framework for Africa. Methods: We conducted a narrative review of global best practices and policies on data sharing and its optimisation. We searched eight databases for publications and undertook an iterative snowballing search of articles cited in the identified publications. The Leximancer software © enabled content analysis and selection of a sample of the most relevant articles for detailed review. Themes were developed through immersion in the extracts of selected articles using inductive thematic analysis. We also performed interviews with public and population health stakeholders in Africa to gather their experiences, perceptions, and expectations of data sharing. Results: Our findings described global stakeholder experiences on research data sharing. We identified some challenges and measures to harness available resources and incentivise data sharing.  We further highlight progress made by the different groups in Africa and identified the infrastructural requirements and considerations when implementing data sharing platforms. Furthermore, the review suggests key reforms required, particularly in the areas of consenting, privacy protection, data ownership, governance, and data access. Conclusions: The findings underscore the critical role of inclusion, social justice, public good, data security, accountability, legislation, reciprocity, and mutual respect in developing a responsive, ethical, durable, and integrated research data sharing ecosystem.
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spelling pubmed-88445382022-02-24 Considerations for an integrated population health databank in Africa: lessons from global best practices Igumbor, Jude O. Bosire, Edna N. Vicente-Crespo, Marta Igumbor, Ehimario U. Olalekan, Uthman A. Chirwa, Tobias F. Kinyanjui, Sam M. Kyobutungi, Catherine Fonn, Sharon Wellcome Open Res Research Article Background: The rising digitisation and proliferation of data sources and repositories cannot be ignored. This trend expands opportunities to integrate and share population health data. Such platforms have many benefits, including the potential to efficiently translate information arising from such data to evidence needed to address complex global health challenges. There are pockets of quality data on the continent that may benefit from greater integration. Integration of data sources is however under-explored in Africa. The aim of this article is to identify the requirements and provide practical recommendations for developing a multi-consortia public and population health data-sharing framework for Africa. Methods: We conducted a narrative review of global best practices and policies on data sharing and its optimisation. We searched eight databases for publications and undertook an iterative snowballing search of articles cited in the identified publications. The Leximancer software © enabled content analysis and selection of a sample of the most relevant articles for detailed review. Themes were developed through immersion in the extracts of selected articles using inductive thematic analysis. We also performed interviews with public and population health stakeholders in Africa to gather their experiences, perceptions, and expectations of data sharing. Results: Our findings described global stakeholder experiences on research data sharing. We identified some challenges and measures to harness available resources and incentivise data sharing.  We further highlight progress made by the different groups in Africa and identified the infrastructural requirements and considerations when implementing data sharing platforms. Furthermore, the review suggests key reforms required, particularly in the areas of consenting, privacy protection, data ownership, governance, and data access. Conclusions: The findings underscore the critical role of inclusion, social justice, public good, data security, accountability, legislation, reciprocity, and mutual respect in developing a responsive, ethical, durable, and integrated research data sharing ecosystem. F1000 Research Limited 2021-08-23 /pmc/articles/PMC8844538/ /pubmed/35224211 http://dx.doi.org/10.12688/wellcomeopenres.17000.1 Text en Copyright: © 2021 Igumbor JO et al. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Igumbor, Jude O.
Bosire, Edna N.
Vicente-Crespo, Marta
Igumbor, Ehimario U.
Olalekan, Uthman A.
Chirwa, Tobias F.
Kinyanjui, Sam M.
Kyobutungi, Catherine
Fonn, Sharon
Considerations for an integrated population health databank in Africa: lessons from global best practices
title Considerations for an integrated population health databank in Africa: lessons from global best practices
title_full Considerations for an integrated population health databank in Africa: lessons from global best practices
title_fullStr Considerations for an integrated population health databank in Africa: lessons from global best practices
title_full_unstemmed Considerations for an integrated population health databank in Africa: lessons from global best practices
title_short Considerations for an integrated population health databank in Africa: lessons from global best practices
title_sort considerations for an integrated population health databank in africa: lessons from global best practices
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8844538/
https://www.ncbi.nlm.nih.gov/pubmed/35224211
http://dx.doi.org/10.12688/wellcomeopenres.17000.1
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