Potentially Identifying Variables Reported in 100 Qualitative Health Research Articles: Implications for Data Sharing and Secondary Analysis

Authors

  • Annie B. Friedrich Medical College of Wisconsin
  • Jessica Mozersky Washington University School of Medicine
  • James M. DuBois Washington University School of Medicine

DOI:

https://doi.org/10.17169/fqs-24.2.3965

Keywords:

qualitative data sharing, health sciences, secondary analysis, potentially identifying variables, de-identification

Abstract

There is a growing trend in social science research to share qualitative data in a repository for others to access. However, some researchers are reticent to share qualitative data. One major concern is how to de-identify qualitative data while maintaining adequate contextual detail to allow secondary users to meaningfully interpret de-identified data. To help inform discussions regarding qualitative data sharing, we reviewed 100 qualitative health science studies to determine what potentially identifying variables (PIVs) are reported in the published literature. There are relatively few PIVs reported in each qualitative study; the majority of studies (n=64) reported two or fewer PIVs. The most commonly reported PIVs were profession, sex or gender, and age. Our findings can help guide de-identification efforts going forward as presumably the PIVs that are most commonly reported provide essential contextual details that will also be needed by secondary users, while PIVs that are rarely reported may not provide essential contextual information for interpretation of data. This suggests it is possible to share qualitative data that are both de-identified and useful for secondary analysis. As data are shared, we recommend researchers mask study sites, as these may uniquely increase the chance of re-identification.

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Author Biographies

Annie B. Friedrich, Medical College of Wisconsin

Annie FRIEDRICH is an assistant professor of bioethics and medical humanities in the Institute for Health & Equity at the Medical College of Wisconsin. In her research, she combines theoretical and empirical analyses to explore the ethical dimensions of clinical care, family-provider communication, and decision making in pediatric settings. She is also an ethics educator and teaches bioethics to medical students, graduate students, and other health professionals.

Jessica Mozersky, Washington University School of Medicine

Jessica MOZERSKY is an assistant professor of medicine in the Bioethics Research Center at Washington University School of Medicine in St. Louis, Missouri. She is a qualitative researcher who conducts empirical research on the ethical and social implications of returning genetic and imaging results to research participants, informed consent, and data sharing.

James M. DuBois, Washington University School of Medicine

James DuBOIS is the Bander professor of medical ethics and director of the Bioethics Research Center at Washington University School of Medicine in St. Louis, Missouri. He is an editor-in-chief of Narrative Inquiry in Bioethics: A Journal of Qualitative Research. In his research, he uses social science methods to examine ethical and social issues surrounding the use of new technologies, informed consent to clinical trials, data sharing, and organ transplantation.

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Published

2023-05-30

How to Cite

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