Abstract
INTRODUCTION: Aspirin is increasingly recommended for colorectal cancer prevention for people with Lynch syndrome, who are at higher risk. Before starting aspirin, patients should be reviewed by a healthcare professional for contraindications. We conducted interviews to explore the views of people with Lynch syndrome and healthcare professionals on aspirin for cancer prevention. While open data sharing is increasingly implemented for quantitative research, it is less likely to be adopted for qualitative data. We aimed to create and share a qualitative dataset of the interview transcripts in a restricted access repository. METHODS: We interviewed 15 people with Lynch syndrome and 23 healthcare professionals. Healthcare professionals included general practitioners (GPs), community pharmacists, genetic counsellors, and specialist hospital clinicians (e.g. genetics, gastroenterology). The interview schedule was informed by the Theoretical Domains Framework. Interviews were conducted over video or telephone. RESULTS: Participants could consent to their anonymised interview transcript being deposited in a restricted repository, with access limited to people using the data for non-commercial research, learning or teaching purposes. Those who did not consent could still participate in the interview. Several transcripts were removed due to identifiability concerns. In total, we deposited 12 transcripts with people with Lynch syndrome, and 8 transcripts with GPs. DISCUSSION: To safeguard participants' identities, we fully anonymised the dataset. While this acted to protect participants' identities, it also potentially reduced its usability due to the removal of rich contextual detail. When sharing qualitative data, it is important to balance confidentiality with data reusability.