Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States

Qualitative research data, such as data from focus groups and in-depth interviews, are increasingly made publicly available and used by secondary researchers, which promotes open science and improves research transparency. This has prompted concerns about the sensitivity of these data, participant confidentiality, data ownership, and the time burden and cost of de-identifying data. As more qualitative researchers (QRs) share sensitive data, they will need support to share responsibly. Few repositories provide qualitative data sharing guidance, and currently, researchers must manually de-identify data prior to sharing. To address these needs, our QDS team worked to identify and reduce ethical and practical barriers to sharing qualitative research data in health sciences research. We developed specific QDS guidelines and tools for data de-identification, depositing, and sharing. Additionally, we developed and tested Qualitative Data Sharing (QuaDS) Software to support qualitative data de-identification. We assisted 28 qualitative health science researchers in preparing and de-identifying data for deposit in a repository. Here, we describe the process of recruiting, enrolling, and assisting QRs to use the guidelines and software and report on the revisions we made to our processes and software based on feedback from QRs and curators and observations made by project team members. Through our pilot project, we demonstrate that qualitative data sharing is feasible and can be done responsibly.