Responsible Sharing of Qualitative Research Data

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

Data science · Data sharing · Engineering ethics · Political science · Sociology · Colorectal Cancer Screening and Detection · Computer Science · Data Analysis and Archiving · Engineering · Medicine

• Data Sharing by Scientists

  Open Access•Carol Tenopir, Suzanne Allard et al.•PLoS ONE•2011

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• Promoting an open research culture

  Open Access•Brian A Nosek, George Alter et al.•Science•2015

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• Secondary Analysis of Archived Data

  Louise Corti, Paul Thompson•Qualitative research practice•2004

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• Is it time to share qualitative research data

  Open Access•James M Dubois, Michelle Strait et al.•Qualitative Psychology•2018

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• Now’s not the time! Qualitative data repositories on tricky ground

  Monique A Guishard•Qualitative Psychology•2018

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• Open science and data sharing in trauma research

  Open Access•Rebecca Campbell, Rachael Goodman‐william et al.•Psychological Trauma Theory…•2022

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• Examining Data Repository Guidelines for Qualitative Data Sharing

  Open Access•Alison L Antes, Heidi A Walsh et al.•Journal of Empirical Research on…•2017

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• Ethical Sharing and Reuse of Qualitative Data

  Open Access•Libby Bishop•Australian Journal of Social Issues•2009

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• Ethical Issues in the Reuse of Qualitative Data

  Open Access•Sarah J Yardley, Sarah Yardley et al.•Qualitative Health Research•2014

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• Qualitative Data Sharing

  Open Access•Alicia Vandevusse, Jennifer Mueller et al.•Qualitative Health Research•2022

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• Blurring Boundaries in Qualitative Health Research on Sensitive Topics

  Open Access•Virginia Dickson-Swift, Erica L James et al.•Qualitative Health Research•2006

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• The Epistemological and Ethical Challenges of Archiving and Sharing Qualitative Data

  Open Access•Feldman, Shelley Feldman et al.•American Behavioral Scientist•2019

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• A Content Analysis of 100 Qualitative Health Research Articles to Examine Researcher-Participant Relationships and Implications for Data Sharing

  Open Access•Jessica Mozersky, Annie B Friedrich et al.•International Journal of…•2022

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• From data archive to ethical labyrinth

  Open Access•Annamaria Carusi, Marina Jirotka•Qualitative Research•2009

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• Qualitative Researchers' Understandings of Their Practice and the Implications for Data Archiving and Sharing

  Open Access•Alex Broom, Lynda Cheshire et al.•Sociology•2009

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