信任是道德货币:撒哈拉以南非洲卫生研究人员对促进公平数据共享战略的看法。

PLOS digital health Pub Date : 2024-09-27 eCollection Date: 2024-09-01 DOI:10.1371/journal.pdig.0000551
Qunita Brown, Jyothi Chabilall, Nezerith Cengiz, Keymanthri Moodley
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引用次数: 0

摘要

开创性的数据共享技术和对非洲大陆存储研究数据的快速访问非常有利于创建多样化、无偏见的数据集,为数字医疗技术和人工智能在医疗保健领域的应用提供依据。然而,撒哈拉以南非洲地区(SSA)的卫生研究人员却面临着个人和集体的挑战,这使他们对共享数据持谨慎甚至犹豫态度,尽管他们承认共享数据对公共卫生有益。这项定性研究报告了卫生研究人员对缓解这些挑战的策略的看法。在 2022 年 7 月至 2023 年 4 月期间,通过 Microsoft Teams 对来自撒哈拉以南非洲地区 16 个不同国家的 16 名研究人员进行了深入访谈。研究采用了有目的抽样和滚雪球抽样技术,通过电子邮件邀请参与者。访谈记录通过 Atlas.ti.22 进行转录、清理、编码和管理。采用主题分析法对数据进行分析。围绕改进数据共享管理的战略,出现了三个重复出现的主题和几个次主题。确定的主要主题是:(1) 政策层面的变革战略:制定准则;(2) 加强数据管理以提高数据质量;(3) 互惠:实现公平的数据共享。建立信任是促进非洲大陆研究人员之间以及与全球合作伙伴共享数据的核心。要做到这一点,就必须提高研究的诚信度,加强微观和宏观管理。资助者和政府需要提供大量资源,以加强数据管理实践、提高数据素养和数据质量。来自非洲的高质量数据将为全球数据集提供多样性,减少医疗保健领域人工智能技术算法的偏差。有必要与包括研究人员和研究团体在内的多个利益相关方合作,在互惠互利的基础上建立公平的数据共享方法。
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Trust as moral currency: Perspectives of health researchers in sub-Saharan Africa on strategies to promote equitable data sharing.

Groundbreaking data-sharing techniques and quick access to stored research data from the African continent are highly beneficial to create diverse unbiased datasets to inform digital health technologies and artificial intelligence in healthcare. Yet health researchers in sub-Saharan Africa (SSA) experience individual and collective challenges that render them cautious and even hesitant to share data despite acknowledging the public health benefits of sharing. This qualitative study reports on the perspectives of health researchers regarding strategies to mitigate these challenges. In-depth interviews were conducted via Microsoft Teams with 16 researchers from 16 different countries across SSA between July 2022 and April 2023. Purposive and snowball sampling techniques were used to invite participants via email. Recorded interviews were transcribed, cleaned, coded and managed through Atlas.ti.22. Thematic Analysis was used to analyse the data. Three recurrent themes and several subthemes emerged around strategies to improve governance of data sharing. The main themes identified were (1) Strategies for change at a policy level: guideline development, (2) Strengthening data governance to improve data quality and (3) Reciprocity: towards equitable data sharing. Building trust is central to the promotion of data sharing amongst researchers on the African continent and with global partners. This can be achieved by enhancing research integrity and strengthening micro and macro level governance. Substantial resources are required from funders and governments to enhance data governance practices, to improve data literacy and to enhance data quality. High quality data from Africa will afford diversity to global data sets, reducing bias in algorithms built for artificial intelligence technologies in healthcare. Engagement with multiple stakeholders including researchers and research communities is necessary to establish an equitable data sharing approach based on reciprocity and mutual benefit.

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