作为科学货币的数据:撒哈拉以南非洲研究人员在共享健康数据方面遇到的挑战。

PLOS digital health Pub Date : 2024-10-24 eCollection Date: 2024-10-01 DOI:10.1371/journal.pdig.0000635
Jyothi Chabilall, Qunita Brown, Nezerith Cengiz, Keymanthri Moodley
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引用次数: 0

摘要

事实证明,创新的信息共享技术和作为科学货币的存储研究数据的快速获取,对医疗保健和健康研究大有裨益。然而,研究人员经常会遇到数据共享与个人学术进步之间的冲突,前者是为了共同利益而促进与健康相关的科学知识,后者是为了个人学术进步而促进与健康相关的科学知识。很少有研究从撒哈拉以南非洲(SSA)卫生研究人员的角度探讨在数据密集型研究背景下数据共享所面临的挑战。这项研究首先进行了一项定量调查和研究,之后研究人员又进行了一项定性研究。这项定性横断面基线研究报告了卫生研究人员在数据共享方面面临的挑战。2022 年 7 月至 2023 年 4 月期间,我们通过 Microsoft Teams 对来自撒哈拉以南非洲地区 16 个不同国家的 16 名健康研究人员进行了深入访谈。我们采用了目的性抽样和滚雪球抽样技术,通过电子邮件邀请参与者。我们使用 ATLAS.ti 对访谈录音进行了转录、编码和专题分析。出现了五个重复出现的主题和几个次主题,分别涉及:(1) 研究人员个人的担忧(对数据共享的恐惧、出版和稿件压力),(2) 影响数据共享的结构性问题,(3) 学术界的认可(研究数据的独家使用、认可和研究奖励),(4) SSA 卫生研究人员经历的伦理挑战(保密和知情同意、商业化和利益共享),以及 (5) 法律空白(法律法规的空白)。在 SSA 的受访者样本中,卫生研究人员对数据共享存在严重的不适感,导致他们不愿共享数据,尽管他们承认这种共享具有科学效益。这种不适感与当地和国际健康研究合作中缺乏适当的指导方针和管理程序有关。因此,对伦理和法律问题的担忧与日俱增。撒哈拉以南非洲地区需要资源来提高数据的质量、价值和真实性,因为这些都是伦理方面的当务之急。通过强有力的指导方针、立法和适当的数据共享协议来加强数据管理,将增加健康研究人员和数据捐赠者之间的信任。
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Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.

Innovative information-sharing techniques and rapid access to stored research data as scientific currency have proved highly beneficial in healthcare and health research. Yet, researchers often experience conflict between data sharing to promote health-related scientific knowledge for the common good and their personal academic advancement. There is a scarcity of studies exploring the perspectives of health researchers in sub-Saharan Africa (SSA) regarding the challenges with data sharing in the context of data-intensive research. The study began with a quantitative survey and research, after which the researchers engaged in a qualitative study. This qualitative cross-sectional baseline study reports on the challenges faced by health researchers, in terms of data sharing. In-depth interviews were conducted via Microsoft Teams between July 2022 and April 2023 with 16 health researchers from 16 different countries across SSA. We employed purposive and snowballing sampling techniques to invite participants via email. The recorded interviews were transcribed, coded and analysed thematically using ATLAS.ti. Five recurrent themes and several subthemes emerged related to (1) individual researcher concerns (fears regarding data sharing, publication and manuscript pressure), (2) structural issues impacting data sharing, (3) recognition in academia (scooping of research data, acknowledgement and research incentives) (4) ethical challenges experienced by health researchers in SSA (confidentiality and informed consent, commercialisation and benefit sharing) and (5) legal lacunae (gaps in laws and regulations). Significant discomfort about data sharing exists amongst health researchers in this sample of respondents from SSA, resulting in a reluctance to share data despite acknowledging the scientific benefits of such sharing. This discomfort is related to the lack of adequate guidelines and governance processes in the context of health research collaborations, both locally and internationally. Consequently, concerns about ethical and legal issues are increasing. Resources are needed in SSA to improve the quality, value and veracity of data-as these are ethical imperatives. Strengthening data governance via robust guidelines, legislation and appropriate data sharing agreements will increase trust amongst health researchers and data donors alike.

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