Sharing qualitative interview data in dialogue with research participants

Abstract

Research data sharing is embedded in policies, guidelines and requirements commonly promoted by research funding organizations that demand data to be “as open as possible, as closed as necessary” and FAIR. This paper discusses the challenges of balancing privacy protection with data sharing in a PhD project involving long-tail, small-sized qualitative human subjects’ data. Based on experiences and feedback from project participants, we argue that privacy protection is about respecting the participants and their self-image. This can be achieved through dialogue and involvement of the participants building on the principles of shared stewardship. Further, we suggest that de-identification and plain language consent materials are better at protecting privacy than anonymisation, which in a digital data environment is difficult to achieve and not necessarily a sensible approach for qualitative data, where the gold is in the details. The literature indicates that it matters to participants whether data are reused for research or other purposes, and that they trust the institutions. This supports our claim that research data services must find better solutions for restricted sharing when necessary.