Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States

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 c...

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Main Authors: Heidi A. Walsh, Meredith V. Parsons, Jessica Mozersky, Aditi Gupta, Albert M. Lai, Annie B. Friedrich, James M. DuBois
Format: Article
Language:English
Published: SAGE Publishing 2025-03-01
Series:International Journal of Qualitative Methods
Online Access:https://doi.org/10.1177/16094069251329607
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author Heidi A. Walsh
Meredith V. Parsons
Jessica Mozersky
Aditi Gupta
Albert M. Lai
Annie B. Friedrich
James M. DuBois
author_facet Heidi A. Walsh
Meredith V. Parsons
Jessica Mozersky
Aditi Gupta
Albert M. Lai
Annie B. Friedrich
James M. DuBois
author_sort Heidi A. Walsh
collection DOAJ
description 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.
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institution Kabale University
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spelling doaj-art-137787410d514ee5a8e77f4812c7ebd12025-08-20T03:48:31ZengSAGE PublishingInternational Journal of Qualitative Methods1609-40692025-03-012410.1177/16094069251329607Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United StatesHeidi A. WalshMeredith V. ParsonsJessica MozerskyAditi GuptaAlbert M. LaiAnnie B. FriedrichJames M. DuBoisQualitative 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.https://doi.org/10.1177/16094069251329607
spellingShingle Heidi A. Walsh
Meredith V. Parsons
Jessica Mozersky
Aditi Gupta
Albert M. Lai
Annie B. Friedrich
James M. DuBois
Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States
International Journal of Qualitative Methods
title Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States
title_full Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States
title_fullStr Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States
title_full_unstemmed Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States
title_short Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States
title_sort responsible sharing of qualitative research data insights from a pioneering project in the united states
url https://doi.org/10.1177/16094069251329607
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