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Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers

Qualitative health data are rarely shared in the United States (U.S.). This is unfortunate because gathering qualitative data is labor and time-intensive, and data sharing enables secondary research, training, and transparency. A new U.S. federal policy mandates data sharing by 2023, and is agnostic...

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Autores principales: Mozersky, Jessica, McIntosh, Tristan, Walsh, Heidi A., Parsons, Meredith V., Goodman, Melody, DuBois, James M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8719660/
https://www.ncbi.nlm.nih.gov/pubmed/34972126
http://dx.doi.org/10.1371/journal.pone.0261719
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author Mozersky, Jessica
McIntosh, Tristan
Walsh, Heidi A.
Parsons, Meredith V.
Goodman, Melody
DuBois, James M.
author_facet Mozersky, Jessica
McIntosh, Tristan
Walsh, Heidi A.
Parsons, Meredith V.
Goodman, Melody
DuBois, James M.
author_sort Mozersky, Jessica
collection PubMed
description Qualitative health data are rarely shared in the United States (U.S.). This is unfortunate because gathering qualitative data is labor and time-intensive, and data sharing enables secondary research, training, and transparency. A new U.S. federal policy mandates data sharing by 2023, and is agnostic to data type. We surveyed U.S. qualitative researchers (N = 425) on the barriers and facilitators of sharing qualitative health or sensitive research data. Most researchers (96%) have never shared qualitative data in a repository. Primary concerns were lack of participant permission to share data, data sensitivity, and breaching trust. Researcher willingness to share would increase if participants agreed and if sharing increased the societal impact of their research. Key resources to increase willingness to share were funding, guidance, and de-identification assistance. Public health and biomedical researchers were most willing to share. Qualitative researchers need to prepare for this new reality as sharing qualitative data requires unique considerations.
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spelling pubmed-87196602022-01-01 Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers Mozersky, Jessica McIntosh, Tristan Walsh, Heidi A. Parsons, Meredith V. Goodman, Melody DuBois, James M. PLoS One Research Article Qualitative health data are rarely shared in the United States (U.S.). This is unfortunate because gathering qualitative data is labor and time-intensive, and data sharing enables secondary research, training, and transparency. A new U.S. federal policy mandates data sharing by 2023, and is agnostic to data type. We surveyed U.S. qualitative researchers (N = 425) on the barriers and facilitators of sharing qualitative health or sensitive research data. Most researchers (96%) have never shared qualitative data in a repository. Primary concerns were lack of participant permission to share data, data sensitivity, and breaching trust. Researcher willingness to share would increase if participants agreed and if sharing increased the societal impact of their research. Key resources to increase willingness to share were funding, guidance, and de-identification assistance. Public health and biomedical researchers were most willing to share. Qualitative researchers need to prepare for this new reality as sharing qualitative data requires unique considerations. Public Library of Science 2021-12-31 /pmc/articles/PMC8719660/ /pubmed/34972126 http://dx.doi.org/10.1371/journal.pone.0261719 Text en © 2021 Mozersky et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Mozersky, Jessica
McIntosh, Tristan
Walsh, Heidi A.
Parsons, Meredith V.
Goodman, Melody
DuBois, James M.
Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers
title Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers
title_full Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers
title_fullStr Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers
title_full_unstemmed Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers
title_short Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers
title_sort barriers and facilitators to qualitative data sharing in the united states: a survey of qualitative researchers
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8719660/
https://www.ncbi.nlm.nih.gov/pubmed/34972126
http://dx.doi.org/10.1371/journal.pone.0261719
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