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.

极具创新性的数据共享技术，以及快速获取非洲大陆存储的研究数据，对于构建多样化、无偏倚的数据集以支撑医疗领域数字健康技术与人工智能的发展具有极高价值。然而，尽管撒哈拉以南非洲（sub-Saharan Africa, SSA）的卫生研究者认可数据共享对公共健康的益处，但他们仍面临个体与集体层面的多重挑战，这使得他们对数据共享持谨慎甚至犹豫的态度。本质性研究旨在报告撒哈拉以南非洲卫生研究者针对缓解上述挑战的相关策略视角。本研究于2022年7月至2023年4月期间，通过Microsoft Teams与来自撒哈拉以南非洲16个国家的16名研究者开展了深度访谈。研究采用立意抽样与滚雪球抽样法，通过电子邮件邀请研究参与者。访谈录音通过Atlas.ti.22完成转录、整理、编码与管理工作。研究采用主题分析法对数据进行分析。围绕优化数据共享治理的策略，研究归纳出3个核心主题与若干子主题。所识别出的核心主题分别为：(1) 政策层面变革策略：指南制定；(2) 强化数据治理以提升数据质量；(3) 互惠原则：迈向公平的数据共享。构建信任是推动非洲大陆研究者内部及与全球合作伙伴开展数据共享的核心要义。可通过提升研究诚信度，以及强化微观与宏观层面的治理来实现这一目标。资助方与政府需投入充足资源，以完善数据治理实践、提升数据素养并优化数据质量。源自非洲的高质量数据将为全球数据集注入多样性，从而降低医疗领域人工智能技术所用算法的偏倚风险。需联合包括研究者与研究共同体在内的多方利益相关者，以构建基于互惠互利原则的公平数据共享模式。