James DuBois, DSc, PhD, received a $1.55 million, 4-year R01 renewal to make research with shared qualitative data more usable, responsible, and trustworthy.
This new project builds on a highly productive prior grant that reduced ethical and practical barriers to sharing qualitative data in health science research. In that project, the team developed novel software to support de-identification of text data. The software has been licensed and marketed as De-ID. They also developed a toolkit and assisted 28 qualitative researchers in preparing, de-identifying, and depositing data with the ICPSR data repository.
In this new arm of the project, as NIH and other agencies increasingly require data sharing, DuBois—who is the Steven J. Bander Professor of Medical Ethics and Professionalism and Executive Director of the Bioethics Research Center at WashU—and colleagues will study how qualitative data deposits are being created and what is needed to make them more useful for future research while protecting participant privacy. They will bring together experts and stakeholders to inform the development of criteria for evaluating the quality and responsibility of qualitative data deposits. It is hoped that NIH, research journals, and other groups that require data sharing will use these criteria in evaluating data sharing plans. The team will then review a sample of qualitative data deposits to assess how accessible, well-documented, and appropriately de-identified they are.
The project will culminate in interviews with qualitative researchers to learn what facilitators and barriers influence their ability to share data responsibly or not at all. The findings will be built into the team’s existing QDS Toolkit and shared broadly with researchers, repositories, journal editors, and qualitative research funders.