Open Science and Data Sharing in Trauma Research: Developing a Trauma-Informed Protocol for Archiving Sensitive Qualitative Data.

Objective: The open science movement seeks to make research more transparent, and to that end, researchers are increasingly expected or required to archive their data in national repositories. In qualitative trauma research, data sharing could compromise participants' safety, privacy, and confidentiality because narrative data can be more difficult to de-identify fully. There is little guidance in the traumatology literature regarding how to discuss data-sharing requirements with participants during the informed consent process. Within a larger research project in which we interviewed assault survivors, we developed and evaluated a protocol for informed consent for qualitative data sharing and engaging participants in data de-identification. Method: We conducted qualitative interviews with N = 32 adult sexual assault survivors regarding (a) how to conduct informed consent for data sharing, (b) whether participants should have input on sharing their data, and (c) whether they wanted to redact information from their transcripts prior to archiving. Results: No potential participants declined participation after learning about the archiving mandate. Survivors indicated that they wanted input on archiving because the interview is their story of trauma and abuse and it would be disempowering not to have control over how this information was shared and disseminated. Survivors also wanted input on this process to help guard their privacy, confidentiality, and safety. None of the participants elected to redact substantive data prior to archiving. Conclusions: Engaging participants in the archiving process is a feasible practice that is important and empowering for trauma survivors. Clinical Impact Statement Researchers are often expected or required to archive their data in national repositories. Sharing data from trauma research studies could compromise participants' safety, privacy, and confidentiality, so researchers must take extra precautions. In this study, we developed and evaluated a trauma-informed archiving protocol. During the consent process, we explained data sharing to our participants and offered them options for what information would be archived and how it would be archived. The protocol was well received, and all participants agreed to archive their data.