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

  • Grant

    NIH/NHGRI
    R01HG009351
    08/17/2017 – 06/30/2021

  • Team

    • James Dubois, DSc, PhD
      Principle Investigator

Description

This project will identify and reduce ethical and practical barriers to sharing qualitative research data in health sciences research. Qualitative research has unique value in understanding the 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. Qualitative research data are rarely shared and concerns exist regarding participant confidentiality, data ownership, and the time burden and cost of de-identifying data.

The PSI Lab is collaborating with Washington University’s Institute for Informatics (I2) to develop software to support the anonymization of qualitative data. The project aims to create a Qualitative Data Sharing Toolkit containing guidance and materials—including the new software—to disseminate to four stakeholder groups: data repositories, qualitative research journals, qualitative textbook authors, and research institutions. The Toolkit will be made freely and publicly available to support data sharing in an ethical manner. Increased data sharing will improve transparency, promote secondary data analysis, and facilitate research training.

Publications

DuBois, J. M., Strait, M., & Walsh, H. (2017). Is it time to share qualitative research data? Qualitative Psychology. Advance online publication. doi: 10.1037/qup0000076.

“Examining Data Repository Guidelines for Qualitative Data Sharing” NIHMS918007