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Exchanging words: Engaging the challenges of sharing qualitative research data

In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States....

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Autores principales: DuBois, James M., Mozersky, Jessica, Parsons, Meredith, Walsh, Heidi A., Friedrich, Annie, Pienta, Amy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: National Academy of Sciences 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10614603/
https://www.ncbi.nlm.nih.gov/pubmed/37831745
http://dx.doi.org/10.1073/pnas.2206981120
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author DuBois, James M.
Mozersky, Jessica
Parsons, Meredith
Walsh, Heidi A.
Friedrich, Annie
Pienta, Amy
author_facet DuBois, James M.
Mozersky, Jessica
Parsons, Meredith
Walsh, Heidi A.
Friedrich, Annie
Pienta, Amy
author_sort DuBois, James M.
collection PubMed
description In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States. Over the past 5 y, our research team has engaged stakeholders on QR data sharing, developed software to support data deidentification, produced guidance, and collaborated with the ICPSR data repository to pilot the deposit of 30 QR datasets. In this perspective article, we share important lessons learned by addressing eight clusters of questions on issues such as where, when, and what to share; how to deidentify data and support high-quality secondary use; budgeting for data sharing; and the permissions needed to share data. We also offer a brief assessment of the state of preparedness of data repositories, QR journals, and QR textbooks to support data sharing. While QR data sharing could yield important benefits to the research community, we quickly need to develop enforceable standards, expertise, and resources to support responsible QR data sharing. Absent these resources, we risk violating participant confidentiality and wasting a significant amount of time and funding on data that are not useful for either secondary use or data transparency and verification.
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spelling pubmed-106146032023-10-31 Exchanging words: Engaging the challenges of sharing qualitative research data DuBois, James M. Mozersky, Jessica Parsons, Meredith Walsh, Heidi A. Friedrich, Annie Pienta, Amy Proc Natl Acad Sci U S A Perspective In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States. Over the past 5 y, our research team has engaged stakeholders on QR data sharing, developed software to support data deidentification, produced guidance, and collaborated with the ICPSR data repository to pilot the deposit of 30 QR datasets. In this perspective article, we share important lessons learned by addressing eight clusters of questions on issues such as where, when, and what to share; how to deidentify data and support high-quality secondary use; budgeting for data sharing; and the permissions needed to share data. We also offer a brief assessment of the state of preparedness of data repositories, QR journals, and QR textbooks to support data sharing. While QR data sharing could yield important benefits to the research community, we quickly need to develop enforceable standards, expertise, and resources to support responsible QR data sharing. Absent these resources, we risk violating participant confidentiality and wasting a significant amount of time and funding on data that are not useful for either secondary use or data transparency and verification. National Academy of Sciences 2023-10-13 2023-10-24 /pmc/articles/PMC10614603/ /pubmed/37831745 http://dx.doi.org/10.1073/pnas.2206981120 Text en Copyright © 2023 the Author(s). Published by PNAS. https://creativecommons.org/licenses/by-nc-nd/4.0/This open access article is distributed under Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND) (https://creativecommons.org/licenses/by-nc-nd/4.0/) .
spellingShingle Perspective
DuBois, James M.
Mozersky, Jessica
Parsons, Meredith
Walsh, Heidi A.
Friedrich, Annie
Pienta, Amy
Exchanging words: Engaging the challenges of sharing qualitative research data
title Exchanging words: Engaging the challenges of sharing qualitative research data
title_full Exchanging words: Engaging the challenges of sharing qualitative research data
title_fullStr Exchanging words: Engaging the challenges of sharing qualitative research data
title_full_unstemmed Exchanging words: Engaging the challenges of sharing qualitative research data
title_short Exchanging words: Engaging the challenges of sharing qualitative research data
title_sort exchanging words: engaging the challenges of sharing qualitative research data
topic Perspective
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10614603/
https://www.ncbi.nlm.nih.gov/pubmed/37831745
http://dx.doi.org/10.1073/pnas.2206981120
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