Sharing Qualitative Research Data: Survey of Qualitative Researchers, United States, 2019 (ICPSR 38957)

Version Date: Mar 28, 2024

Cite this study |

Principal Investigator(s):
James M. DuBois, Washington University in St. Louis. School of Medicine

https://doi.org/10.3886/ICPSR38957.v1

Version V1

Slide tabs to view more

Summary

Qualitative health data are rarely shared in the United States. The U.S. qualitative researchers (N = 425) were surveyed 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. 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.

Citation

DuBois, James M. Sharing Qualitative Research Data: Survey of Qualitative Researchers, United States, 2019. Inter-university Consortium for Political and Social Research [distributor], 2024-03-28. https://doi.org/10.3886/ICPSR38957.v1

Export Citation:

  • RIS (generic format for RefWorks, EndNote, etc.)
  • EndNote

Funding

United States Department of Health and Human Services. National Institutes of Health. National Human Genome Research Institute (R01HG009351)

Subject Terms

Geographic Coverage

Restrictions

This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, some of the data files in this collection are restricted from general dissemination. To obtain these restricted files researchers must agree to the terms and conditions of a Restricted Data Use Agreement.

Distributor(s)

Inter-university Consortium for Political and Social Research
Hide

Time Period(s)

2019

Date of Collection

2018-12-11 -- 2019-07-15

Data Collection Notes

  1. This study is related to the Qualitative Data Sharing (QDS) Project Series, though not part of the series itself.
Hide

Study Purpose

The purpose of this study was to gather information on researchers' experiences with sharing qualitative research data.

Study Design

This data was collected as part of the NIH-funded R01 Sharing Qualitative Research Data: Identifying and Addressing Ethical and Practical Barriers (grant 5R01HG009351-02). U.S. researchers were eligible if they were the principal investigator or lead of a project involving qualitative data collection. Participants were identified through publicly available contact information from the NIH reporter website: https://projectreporter.nih.gov, and their affiliated academic institution's website. The researchers searched NIH reporter using the search terms "qualitative," "interview," and "focus group" to identify NIH funded researchers of projects with at least one qualitative aim. To ensure adequate representation of researchers from minority communities, they also recruited through the Robert Wood Johnson Foundation New Connections network, Brothers of the Academy, Sisters of the Academy, Latina Researchers Network, Society for the Advancement of Chicanos/Hispanics and Native Americans in Science and the National Center for Faculty Development and Diversity. Researchers sent personalized emails or reached out on social media sites (i.e., Twitter and LinkedIn) to ask their followers and colleagues to share the link to the survey with qualitative researchers. The recruitment message was shared on Twitter by the Qualitative Data Repository (QDR), Dataverse Project, ICPSR, NIB Journal, and by many individual colleagues.

Sample

Convenience sampling was used for the study. Aside from recruiting via social media and snowball sampling, researchers sent 3,119 people personalized recruitment emails and followed up with reminder emails and a final phone call reminder to those who didn't respond to prior recruitment attempts. Of the 676 respondents who initiated the web-based survey, 251 were excluded from analyses for not meeting study criteria (i.e., participants had not led and conducted qualitative research with human subjects, participants did not work at an institution in the U.S.) or did not complete more than 50% of the survey, which was forced choice to avoid the problem of missing data. The final sample comprised of 425 qualitative researchers in the U.S. from a variety of academic disciplines including public health, bioethics, and clinical fields (i.e., medicine, nursing, occupational and physical therapy) (n = 152, 38%); anthropology and sociology (n = 133, 33%); and other disciplines (n = 118, 29%).

Time Method

Cross-sectional

Universe

Principal investigators or people leading projects involving qualitative data collection who work at research institutions in the United States.

Unit(s) of Observation

Individual

Data Type(s)

Mode of Data Collection

Hide

Original Release Date

2024-03-28

Version History

2024-03-28 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:

  • Created variable labels and/or value labels.
  • Checked for undocumented or out-of-range codes.

Hide

Notes