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

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 BRC 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.

DuBois, J. M., Strait, M., & Walsh, H. (2017). Is It Time to Share Qualitative Research Data? Qualitative Psychology, 5(3), 380-393. doi:10.1037/qup0000076

DuBois, J. M., Walsh, H., & Strait, M. (2017). It is time to share (some) qualitative data: Reply to Guishard (2017), McCurdy and Ross (2017), and Roller and Lavrakas (2017). Qualitative Psychology. doi:10.1037/qup0000092

Antes, A. L., Walsh, H. A., Strait, M., Hudson-Vitale, C. R., & DuBois, J. M. (2018). Examining Data Repository Guidelines for Qualitative Data Sharing. Journal of Empirical Research on Human Research Ethics, 13(1), 61-73. doi:10.1177/1556264617744121

Mozersky, J., Parsons, M., Walsh, H. A., Baldwin, K., McIntosh, T., & DuBois, J. M. (2020). Research participant views regarding qualitative data sharing. Ethics & Human Research, 42(2), 13-27. doi:10.1002/eahr.500044

Mozersky, J., Walsh, H., Parsons, M., McIntosh, T., Baldwin, K., & DuBois, J. M. (2020). Are we ready to share qualitative research data? Knowledge and preparedness among qualitative researchers, IRB members, and data repository curators. IASSIST Quarterly, 43(4), 1-23. doi:10.29173/iq952

Gupta, A., Lai, A., Mozersky, J., Ma, X., Walsh, H., & DuBois, J. M. (2021). Enabling qualitative research data sharing using a natural language processing pipeline for deidentification: moving beyond HIPAA Safe Harbor identifiers. JAMIA Open, 4(3), 1-10.

Mozersky, J., McIntosh, T., Walsh, H. A., Parsons, M. V., Goodman, M., & DuBois, J. M. (2021). Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers. PLOS One, 16(12), e0261719. doi:10.1371/journal.pone.0261719

Mozersky, J., Friedrich, A. B., & DuBois, J. M. (2022). A content analysis of 100 qualitative health research articles to examine researcher-participant relationships and implications for data sharing. International Journal of Qualitative Methods, 21. https://doi.org/10.1177/16094069221105074

Friedrich, A. B., Mozersky, J., & DuBois, J. M. (2023). Potentially Identifying Variables Reported in 100 Qualitative Health Research Articles: Implications for Data Sharing and Secondary Analysis. Forum Qualitative Sozialforschung Forum: Qualitative Social Research, 24(2). https://doi.org/10.17169/fqs-24.2.3965