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
School of Public Health, University of the Witwatersrand, Johannesburg, Gauteng, 2193, South Africa.
African Population and Health Research Centre, Nairobi, Kenya.
Wellcome Open Res. 2021 Aug 23;6:214. doi: 10.12688/wellcomeopenres.17000.1. eCollection 2021.
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. 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. 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. 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.
数据来源和存储库日益增长的数字化及扩散现象不容忽视。这一趋势拓展了整合与共享人群健康数据的机会。此类平台有诸多益处，包括有潜力将这些数据产生的信息高效转化为应对复杂全球健康挑战所需的证据。非洲大陆有一些高质量数据可能会从进一步整合中受益。然而，非洲在数据源整合方面的探索尚不充分。本文旨在确定相关要求，并为非洲制定一个多联盟公共和人群健康数据共享框架提供切实可行的建议。我们对全球数据共享及其优化的最佳实践和政策进行了叙述性综述。我们在八个数据库中搜索出版物，并对已识别出版物中引用的文章进行了迭代滚雪球式搜索。Leximancer软件©实现了内容分析，并挑选了最相关的文章样本进行详细审查。通过使用归纳主题分析法深入研究选定文章的摘录来确定主题。我们还采访了非洲的公共和人群健康利益相关者，以收集他们对数据共享的经验、看法和期望。我们的研究结果描述了全球利益相关者在研究数据共享方面的经验。我们确定了一些挑战以及利用现有资源和激励数据共享的措施。我们进一步强调了非洲不同群体取得的进展，并确定了实施数据共享平台时的基础设施要求和注意事项。此外，该综述提出了所需的关键改革措施，特别是在同意、隐私保护、数据所有权、治理和数据访问等领域。研究结果强调了包容、社会正义、公共利益、数据安全、问责制、立法、互惠和相互尊重在构建一个响应迅速、符合伦理、持久且整合的研究数据共享生态系统中的关键作用。
