Chabilall Jyothi, Brown Qunita, Cengiz Nezerith, Moodley Keymanthri
Business Management, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
Division of Medical Ethics and Law, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
PLOS Digit Health. 2024 Oct 24;3(10):e0000635. doi: 10.1371/journal.pdig.0000635. eCollection 2024 Oct.
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.
创新的信息共享技术以及将存储的研究数据作为科学货币快速获取,已被证明在医疗保健和健康研究中非常有益。然而,研究人员在为了公共利益而共享数据以促进与健康相关的科学知识和个人学术进步之间常常经历冲突。在数据密集型研究背景下,探索撒哈拉以南非洲(SSA)健康研究人员对数据共享挑战的看法的研究很少。该研究始于定量调查和研究,之后研究人员进行了定性研究。这项定性横断面基线研究报告了健康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,通过微软团队对来自SSA 16个不同国家的16名健康研究人员进行了深入访谈。我们采用目的抽样和滚雪球抽样技术通过电子邮件邀请参与者。对录制的访谈进行转录、编码,并使用ATLAS.ti进行主题分析。出现了五个反复出现的主题和几个子主题,分别涉及(1)研究人员个人的担忧(对数据共享、发表和稿件压力的恐惧),(2)影响数据共享的结构问题,(3)学术界的认可(研究数据的抢先获取、致谢和研究激励),(4)SSA健康研究人员遇到的伦理挑战(保密和知情同意、商业化和利益分享)以及(5)法律漏洞(法律法规中的空白)。在来自SSA的这个受访者样本中,健康研究人员对数据共享存在明显的不适感,导致他们尽管承认这种共享的科学益处,但仍不愿共享数据。这种不适感与本地和国际健康研究合作背景下缺乏适当的指导方针和治理流程有关。因此,对伦理和法律问题的担忧在增加。SSA需要资源来提高数据质量以及价值和准确性,因为这些是伦理要求。通过强有力的指导方针、立法和适当的数据共享协议加强数据治理,将增强健康研究人员和数据捐赠者之间的信任。