Sharing Qualitative Research Data: Interviews with Research Participants, United States, 2018 (ICPSR 38870)

Version Date: Oct 17, 2023

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

Series:

https://doi.org/10.3886/ICPSR38870.v2

Version V2 ()

  • V2 [2023-10-17]
  • V1 [2023-10-16] unpublished
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Summary

This study uses data from demographic surveys and semi-structured, in-depth qualitative interviews with 30 individuals who had experience participating in sensitive qualitative research studies to explore their understanding and concerns about qualitative data sharing. Participants were recruited from a research volunteer registry based in the Midwestern United States for an online pre-interview demographics survey and a phone interview.

Citation

DuBois, James M. Sharing Qualitative Research Data: Interviews with Research Participants, United States, 2018. Inter-university Consortium for Political and Social Research [distributor], 2023-10-17. https://doi.org/10.3886/ICPSR38870.v2

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Funding

National Institute of Health/National Human Genome Research Institute (NHGRI) (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, this data collection is restricted from general dissemination. To obtain this file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2018

Date of Collection

2018-01 -- 2018-02

Data Collection Notes

  1. This study is part of the Washington University in St. Louis (WUSTL) Qualitative Data Sharing (QDS) project.

  2. ICPSR has zipped the 30 interview transcripts in a qualitative data package (DS1), which is available for restricted download.

  3. The pre-interview survey data (DS2) has been released as received by the depositor.

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Study Purpose

The purpose of this study was to explore understanding and concerns about sharing qualitative data from individuals who have previously participated in qualitative studies regarding sensitive health topics.

Study Design

Over a two-week period, the research team recruited participants through the Washington University School of Medicine Volunteer for Health Research Participant Registry. Registry staff posted recruitment flyers and information about the study online. Individuals interested in participating completed a pre-interview Qualtrics demographic survey prior to an in-depth interview via phone. Participants received a $30 Amazon gift card after interview completion. Interviews were audio-recorded and transcribed verbatim. Survey and interview data were coded with Dedoose, using a combination of inductive and deductive coding techniques.

Sample

To be eligible, individuals must have participated in at least one qualitative research study concerning health or sensitive health behaviors, had access to the Internet to complete the pre-interview survey, and were 18 years or older. 30 participants completed the pre-interview demographic survey and in-depth interview. African-Americans were purposely oversampled to ensure that they comprised half of the respondents in the study.

Time Method

Cross-sectional

Universe

Participants had to be 18 years of age or older and must have participated in at least one qualitative research study concerning their health or sensitive health behaviors such as substance abuse or sexual behavior.

Unit(s) of Observation

Individual

Data Type(s)

Mode of Data Collection

Description of Variables

The pre-interview survey asked participants how many research studies they had been involved in, the types of studies, if they had disclosed any sensitive information (e.g., financial history, personal health information, sexual behavior, illegal behavior, drug use), and motivations for participating in research. Demographic items included sex, age, education, employment status, race, and ethnicity.

The in-depth interview were structured based on the following themes:

  • Details of previous research study participation
  • Knowledge about data sharing, reaction to the idea of data sharing, and reasons why researchers might share data
  • Privacy/confidentiality issues and concerns
  • Feedback on usefulness of tools for data sharing (e.g., de-identification software, sharing guidelines, data curation)

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Original Release Date

2023-10-16

Version History

2023-10-17 The README document was updated to correct an error.

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Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.