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

共享定性研究数据：识别和解决道德和实践障碍

• 批准号: 9390653
• 负责人: James M Dubois
• 金额: $ 50.38万
• 依托单位: WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-08-17 至 2021-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9390653
• 关键词: Address; Adoption; Algorithms; Attitude; Bioinformatics; Case Study; Clinical; Computer software; Data; Data Analyses; Databases; Deposition; Development; Ensure; Ethical Issues; Ethics; Evaluation; Feedback; Fostering; Genetic; Guidelines; HIV; Health; Health behavior; Human; Institution; Institutional Review Boards; Interview; Journals; Knowledge; Literature; Minority Groups; Names; Ownership; Participant; Policies; Process; Publications; Qualitative Methods; Qualitative Research; Recommendation; Recruitment Activity; Regulation; Research; Research Design; Research Ethics; Research Methodology; Research Personnel; Research Training; Resource Sharing; Resources; Risk Factors; Sampling; Science; Stigmatization; Students; Survey Methodology; Surveys; Telephone Interviews; Textbooks; Time; Training; Trust; United States National Institutes of Health; addiction; base; cost; cost effective; data sharing; formative assessment; health science research; implementation science; improved; innovation; interest; member; novel; repository; software development; trait

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.

项目摘要 该项目将确定和解决质量数据共享（QDS）的道德和实际障碍， 健康科学研究。质性研究在理解健康行为和健康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遗传成瘾倾向。因此 许多定性数据是敏感的，并且这些数据是在信任关系中提供的。NIH政策指南 声明“所有数据都应考虑用于数据共享”。共享定性数据提供了具有成本效益的方法 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 很少共享，存在对参与者保密性、数据所有权和时间负担的担忧 和去识别数据的成本。 该项目逻辑上跨越三个目标，最终系统地传播QDS工具包 其中包括QDS和数据匿名化支持软件和数据的知情者指南 通过与定性研究人员的形成性评估过程进行改进的策展过程。 1.我们将与不同的利益相关者合作，以确定QDS的道德和实际障碍。我们将进行- 与定性研究人员、机构审查委员会成员、数据 策展人和前研究参与者探讨对QDS的态度和建议。 2.我们将进行定性数据共享试验。30名定性研究人员将存款数据与 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 将对所有这些资源提供反馈，以指导修订。 3.我们将开发、评估和推广QDS工具包。QDS工具包内容将基于 文献评审员、利益相关者的输入和在形成性评价过程中获得的用户反馈 工具箱。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。为每个 小组，我们将确定当前的做法，提供访问QDS工具包，建议采用 具体做法，并跟踪采用。 该项目将通过提高透明度和开放性，对定性健康研究产生重大影响， 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工具包和所有材料开发期间 该项目将免费向用户公开。