Sharing Qualitative Research Data: Identifying and Addressing Ethical and Practical Barriers

项目摘要 该项目将确定并解决质量数据共享(QDS)的道德和实践障碍 健康科学研究。定性研究在理解健康行为和特征方面具有独特的价值 那些被污名化和隐藏的因素，如艾滋病毒的风险因素或成瘾的遗传倾向。因此，a 很多定性数据是敏感的，这些数据是在信任关系中提供的。美国国立卫生研究院政策指导 声明“应考虑将所有数据用于数据共享。”共享定性数据提供了经济高效的方式 为科学、研究人员和学生提供重要的利益。然而，定性研究数据是 参与者的机密性、数据所有权和时间负担很少共享和担忧 以及取消识别数据的成本。 这个项目在逻辑上跨越了三个目标，最终系统地传播了QDS工具包 这包括利益相关者了解的QDS指南以及数据匿名化支持软件和数据 通过与定性研究人员一起进行形成性评估过程而改进的管理过程。 1.我们将让不同的利益相关者参与，以确定QDS的道德和实践障碍。我们将在- 与定性研究人员、机构审查委员会成员、数据的深度访谈和调查 馆长和前研究参与者探讨对QDS的态度和建议。 2.开展定性数据共享试点。30名定性研究人员将把数据存放在 合作伙伴数据存储库。为了减轻QDS对研究人员的负担，我们将开发定性数据 匿名化支持软件、QDS指南和高效的数据管理流程。研究人员 将提供对所有这些资源的反馈，以指导修订。 3.我们将开发、评估和传播QDS工具包。QDS工具包的内容将基于 在形成性评估过程中获得的文献审查者、利益相关者输入和用户反馈 工具包。我们希望它将包含通过案例研究提供的道德指导，以及所有材料 通过目标1和目标2制定。我们将针对四个群体进行传播：(A)数据储存库；(B) 定性研究期刊；(C)定性教科书作者；(D)研究机构。对于每个 小组，我们将确定当前的做法，提供对QDS工具包的访问，建议采用 具体做法，并跟踪采用情况。 该项目将通过增加透明度和公开性对定性卫生研究产生高度影响， 促进二级数据分析，促进研究培训，同时尊重 参与者、研究人员、机构和法规。QDS工具包和期间开发的所有材料 该项目将向公众免费提供给用户。

Project Summary This project will identify and address ethical and practical barriers to qualitative data sharing (QDS) in health sciences research. Qualitative research has unique value in understanding health behaviors and traits that are stigmatized and hidden such as risk factors for HIV or a genetic propensity to addiction. Accordingly, a lot of qualitative data are sensitive, and the data are provided within relationships of trust. NIH policy guidance states that “all data should be considered for data sharing.” Sharing qualitative data offers cost-effective ways of providing important benefits to science, researchers, and students. However, qualitative research data are rarely shared and concerns exist regarding participant confidentiality, data ownership, and the time burden and cost of de-identifying data. This project builds logically across three aims culminating in the systematic dissemination of a QDS Toolkit that includes stakeholder-informed guidelines for QDS and data anonymization support software and data curation processes that have been refined through a formative evaluation process with qualitative researchers. 1. We will engage diverse stakeholders to identify ethical and practical barriers to QDS. We will conduct in- depth interviews and surveys with qualitative researchers, institutional review board members, data curators, and former research participants to explore attitudes toward and recommendations for QDS. 2. We will conduct a qualitative data sharing trial. Thirty qualitative researchers will deposit data with a partner data repository. To reduce the burden of QDS on researchers, we will develop qualitative data anonymization support software, guidelines for QDS, and efficient data curation processes. Researchers will provide feedback on all of these resources to guide revisions. 3. We will develop, evaluate, and disseminate a QDS Toolkit. QDS Toolkit content will be based on literature reviewers, stakeholder input, and user feedback obtained during formative evaluation of the toolkit. We expect it will contain ethical guidance provided through case studies, as well as all materials developed through Aims 1 and 2. We will target four groups for dissemination: (a) data repositories; (b) qualitative research journals; (c) qualitative textbook authors; and (d) research institutions. For each group, we will identify current practices, provide access to the QDS Toolkit, recommend adoption of specific practices, and track adoption. This project will have a high impact on qualitative health research by increasing transparency and openness, promoting secondary data analysis, and facilitating research training, while demonstrating respect for participants, researchers, institutions, and regulations. The QDS Toolkit and all materials developed during this project will be made publicly available at no cost to users.