Considerations for an integrated population health databank in Africa: lessons from global best practices [version 1; peer review: 2 approved]

Wellcome Open Research

Catherine Kyobutungi¹  Sam M. Kinyanjui²  Ehimario U. Igumbor³  Tobias F. Chirwa⁴  Marta Vicente-Crespo⁴  Edna N. Bosire⁴  Sharon Fonn⁴  Jude O. Igumbor⁴  Uthman A. Olalekan⁵ 

[1] African Population and Health Research Centre, Nairobi, Kenya;KEMRI Wellcome Trust Research Programme, Filifi, Kenya;Nigeria Centre for Disease Control, Abuja, Nigeria;School of Public Health, University of the Witwatersrand, Johannesburg, Gauteng, 2193, South Africa;Warwick-Centre for Applied Health Research and Delivery (WCAHRD), Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK;

关键词: Data sharing;    open science;    databank;    ethics;    population health;    eng;   

DOI  :  

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown