Sharing Qualitative Interview Data in Dialogue with Research Participants

Live Håndlykken Kvale, Nils Pharo, Peter Darch
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引用次数: 0

Abstract

ABSTRACT Research data sharing is embedded in policies, guidelines and requirements commonly promoted by research funding organizations that demand data to be “as open as possible, as closed as necessary” and FAIR. This paper discusses the challenges of balancing privacy protection with data sharing in a PhD project involving long‐tail, small‐sized qualitative human subjects' data. Based on experiences and feedback from project participants, we argue that privacy protection is about respecting the participants and their self‐image. This can be achieved through dialogue and involvement of the participants building on the principles of shared stewardship. Further, we suggest that de‐identification and plain language consent materials are better at protecting privacy than anonymisation, which in a digital data environment is difficult to achieve and not necessarily a sensible approach for qualitative data, where the gold is in the details. The literature indicates that it matters to participants whether data are reused for research or other purposes, and that they trust the institutions. This supports our claim that research data services must find better solutions for restricted sharing when necessary.
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在与研究参与者的对话中分享定性访谈数据
研究数据共享嵌入在研究资助组织通常提倡的政策、指南和要求中,这些组织要求数据“尽可能开放,必要时尽可能封闭”和公平。本文讨论了在涉及长尾、小型定性人类受试者数据的博士项目中平衡隐私保护与数据共享的挑战。根据项目参与者的经验和反馈,我们认为隐私保护就是尊重参与者和他们的自我形象。这可以通过参与者在共同管理原则基础上的对话和参与来实现。此外,我们建议去识别和简单的语言同意材料在保护隐私方面比匿名化更好,匿名化在数字数据环境中很难实现,也不一定是定性数据的明智方法,其中黄金在于细节。文献表明,数据是否被用于研究或其他目的对参与者很重要,并且他们信任机构。这支持了我们的观点,即研究数据服务必须在必要时找到更好的解决方案来限制共享。
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来源期刊
Proceedings of the Association for Information Science and Technology
Proceedings of the Association for Information Science and Technology Social Sciences-Library and Information Sciences
CiteScore
1.30
自引率
0.00%
发文量
164
期刊介绍: Information not localized
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