Are we ready to share qualitative research data? Knowledge and preparedness among qualitative researchers, IRB Members, and data repository curators.
Are we ready to share qualitative research data? Knowledge and preparedness among qualitative researchers, IRB Members, and data repository curators.
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DOI：
10.29173/iq952
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发表时间：
2020-01-08
期刊：
影响因子：
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通讯作者：
DuBois, James M
中科院分区：
文献类型：
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作者：
Mozersky, Jessica;Walsh, Heidi;DuBois, James M
数据共享最大限度地提高了数据的价值，这是时间和资源密集型的收集。美国（US）的主要资助机构，如国立卫生研究院（NIH），要求数据共享，研究人员经常共享去识别的定量数据。相比之下，在美国很少共享定性数据，但数据共享和开放科学的趋势越来越明显，这可能是未来所需要的。定性方法通常用于探索敏感的健康主题，这在保护机密性同时为二次分析保持足够的背景细节方面提出了独特的伦理挑战。在这里，我们报告了对30名数据库管理员、30名定性研究人员和30名IRB工作人员进行半结构化深入访谈的结果，以探索他们对QDS的经验和知识。我们的研究结果表明，所有利益相关者群体缺乏准备QDS。研究人员是知识最少的，往往不熟悉在知识库中共享定性数据的概念。策展人高度支持QDS，但并非所有策展人都有过策划定性数据集的经验，并表示他们希望获得针对QDS的指导和标准。IRB成员缺乏对QDS的熟悉，尽管只要遵循适当的法律的和监管程序，他们就会支持QDS。IRB成员和数据管理者不准备就法律的和监管问题向研究人员提供建议，这可能会使知识最少的研究人员得不到指导。符合道德和生产力的QDS将需要克服障碍，制定标准，并改变所有利益相关者群体长期以来的做法。
Data sharing maximizes the value of data, which is time and resource intensive to collect. Major funding bodies in the United States (US), like the National Institutes of Health (NIH), require data sharing and researchers frequently share de-identified quantitative data. In contrast, qualitative data are rarely shared in the US but the increasing trend towards data sharing and open science suggest this may be required in future. Qualitative methods are often used to explore sensitive health topics raising unique ethical challenges regarding protecting confidentiality while maintaining enough contextual detail for secondary analyses. Here, we report findings from semi-structured in-depth interviews with 30 data repository curators, 30 qualitative researchers, and 30 IRB staff members to explore their experience and knowledge of QDS. Our findings indicate that all stakeholder groups lack preparedness for QDS. Researchers are the least knowledgeable and are often unfamiliar with the concept of sharing qualitative data in a repository. Curators are highly supportive of QDS, but not all have experienced curating qualitative data sets and indicated they would like guidance and standards specific to QDS. IRB members lack familiarity with QDS although they support it as long as proper legal and regulatory procedures are followed. IRB members and data curators are not prepared to advise researchers on legal and regulatory matters, potentially leaving researchers who have the least knowledge with no guidance. Ethical and productive QDS will require overcoming barriers, creating standards, and changing long held practices among all stakeholder groups.