Abstract
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.
Original language | English (US) |
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Article number | e0261719 |
Journal | PloS one |
Volume | 16 |
Issue number | 12 |
DOIs | |
State | Published - Dec 2021 |
Keywords
- Access to Information
- Adult
- Biomedical Research
- Data Accuracy
- Data Collection
- Female
- Humans
- Information Dissemination
- Male
- Middle Aged
- National Institutes of Health (U.S.)
- Public Health
- Qualitative Research
- Research Personnel
- Surveys and Questionnaires
- Trust
- United States
ASJC Scopus subject areas
- General