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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Bibliographic Details
Published in:PloS one 2021-12, Vol.16 (12), p.e0261719-e0261719
Main Authors: Mozersky, Jessica, McIntosh, Tristan, Walsh, Heidi A, Parsons, Meredith V, Goodman, Melody, DuBois, James M
Format: Article
Language:English
Subjects:
Access to Information
Adult
Bioethics
Biology and Life Sciences
Biomedical Research
Computer and Information Sciences
Data Accuracy
Data Collection
Data retrieval
Engineering and Technology
Federal policy
Female
Health aspects
Humans
Information Dissemination
Information management
Information sharing
Male
Management
Medical records
Medical research
Medicine
Medicine and Health Sciences
Middle Aged
National Institutes of Health (U.S.)
Public Health
Qualitative analysis
Qualitative Research
Research and Analysis Methods
Research Personnel
Researchers
Science Policy
Social Sciences
Surveys and Questionnaires
Trust
United States
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Summary: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.
ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0261719