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

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.