Qualitative Data Sharing (QDS) Project Series

The Qualitative Data Sharing (QDS) Project was funded by the National Human Genome Research Institute [R01 HG009351; PI James DuBois]. The project was carried out by a collaborative team of researchers at the Bioethics Research Center (BRC) at Washington University School of Medicine in St. Louis, Washington University’s Institute for Informatics (I²), and the Inter-university Consortium for Political and Social Research (ICPSR) at the University of Michigan.

Qualitative research data are rarely shared. Concerns exist regarding the sensitivity of data, participant confidentiality, data ownership, and the time burden and cost of de-identifying data. However, increased data sharing is required by some funding agencies, and will improve transparency, promote secondary data analysis, and facilitate research training. Our QDS team worked to identify and reduce ethical and practical barriers to sharing qualitative research data in health sciences research. The project team developed specific QDS guidelines and pipelines for data deidentification, deposit, and sharing. Additionally, the team developed and tested Qualitative Data Sharing (QuaDS) Software to support qualitative data de-identification. The datasets in this series were de-identified using the QuaDS Software and the project’s QDS guidelines.

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