Open science and data sharing in trauma research: Developing a trauma-informed protocol for archiving sensitive qualitative data.

Abstract

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.

A Transparency Checklist for Qualitative Research

“…We believe that including considerations about which materials to eventually make public is a significant benefit of this checklist. By considering ethical issues such as data sharing early, researchers can plan accordingly and include participants' perspectives into the relevant decisions [21,23,56] and thus addressing ethical concerns to sharing qualitative data. We also hold, however, that this tool remains useful even if used exclusively as an internal checklist.…”

“…Transparent research is an ideal, and transparency is best understood on a continuum: research can be more or less transparent and, all things being equal, we should strive to move our practices towards the transparent end of that continuum. By providing practical guidance for more open, transparent qualitative research, we add to a growing literature on openness in qualitative research, including on such topics as pre-registration [19], authorship [20], consent for sharing data [21][22][23], and de-identifying and sharing sensitive qualitative data [24,25].…”

Victim Notification Protocols for Untested Sexual Assault Kits: Survivors’ and Advocates’ Perspectives on Law Enforcement-Led Outreach Methods

“…Survivors’ contact information could not be provided to the research team, per the agency's confidentiality policy and the policies of their funders, so the advocates agreed to reach out to survivors to explain the study and request their participation (see Campbell et al, in press for protocol). The advocates noted that it would be challenging to reconnect with these survivors, as many had been hard to find during their court cases (e.g., changes in phone numbers and addresses), and some may not want to discuss the matter further.…”

“…To establish confirmability (i.e., the findings reflect the participants’ views, not the researchers’ biases), the PI kept field notes and wrote reflexive memos throughout the project. We kept an audit trail (see above) and conducted triangulation assessments (see above) to ensure that the findings did not reflect the biases of the research team (see Campbell et al, in press for the team's positionality statement and how we engaged our positionalities throughout the conduct of this research).…”

Open-Science Guidance for Qualitative Research: An Empirically Validated Approach for De-Identifying Sensitive Narrative Data

“…Thus, data sharing raises ethical questions about participants’ agency and control of their information. Formative studies that have explored how research participants feel about data sharing have found they are generally agreeable because they want to maximize what can be learned from their experiences to help others (Campbell, Goodman-Williams, Engleton, et al, 2023; Kuula, 2011; Mozersky, Parsons, et al, 2020; VandeVusse et al, 2022; Yardley et al, 2014). However, participants emphasized that researchers must seek informed consent for data sharing; consent to participate in the study does not give researchers implicit permission to share the data collected in that study (for consent-language options, see Kaiser, 2009).…”