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

基本信息

批准号：
10614306
负责人：
James M Dubois
金额：
$ 23.89万
依托单位：
WASHINGTON UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-05-01 至 2023-12-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10614306
关键词：
Address Adoption Algorithms Attitude Bioinformatics Case Study Clinical Computer software Data Data Analyses 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 Regulation Research Research Design Research Ethics Research Methodology Research Personnel Research Training 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 anonymization data curation data de-identification data repository data sharing data sharing networks ethical legal social implication formative assessment health science research implementation science improved innovation interest member novel recruit repository software development trait

项目摘要

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并解决定性数据共享（QD）（QD）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被污名化和隐藏的，例如艾滋病毒的危险因素或成瘾的遗传倾向。根据，许多定性数据很敏感，并且在信任关系中提供了数据。 NIH政策指导指出“所有数据都应考虑用于数据共享”。共享定性数据提供具有成本效益的方式为科学，研究人员和学生提供重要好处。但是，定性研究数据是关于参与机密性，数据所有权和伯恩的时间很少共享，并且存在疑虑和识别数据的成本。该项目以逻辑为基础，跨三个目标，最终导致QDS Toolkit的系统传播其中包括QD和数据匿名支持软件和数据的利益相关者信息指南通过与定性研究人员的形成性评估过程进行了完善的策展过程。 1。我们将吸引潜水员利益相关者确定QD的道德和实践障碍。我们将进行 - 与定性研究人员，机构审查委员会成员，数据的深度访谈和调查策展人和前研究参与者探索与会者对QD的建议和建议。 2。我们将进行定性数据共享试验。 30个定性研究人员将用合作伙伴数据存储库。为了减少QD对研究人员的Burnen，我们将开发定性数据匿名支持软件，QD指南以及有效的数据策划过程。研究人员将提供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文献审阅者，利益相关者的意见和用户反馈在对工具包。我们预计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开发。我们将针对四个组进行传播：（a）数据存储库；（b）定性研究期刊；（c）定性教科书作者；（d）研究机构。每个小组，我们将确定当前实践，提供对QD工具包的访问，建议采用具体实践和跟踪采用。该项目将通过提高透明度和开放性，对定性健康研究产生很大影响，促进二级数据分析并支持研究培训，同时证明参与者，研究人员，机构和法规。 QD工具包和所有材料在该项目将免费向用户公开提供。