DOI: 10.3886/icpsr38870.v1
title: Sharing Qualitative Research Data: Interviews with Research Participants, United States, 2018
title: Version 1

description: 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.
description: 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.
description: 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.
description: 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)
description: 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.
description: Datasets: DS0: Study-Level Files DS1: Interview Data DS2: Pre-Interview Survey Data
description: 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.
description: telephone interview; web-based surveyThis study is part of the Washington University in St. Louis (WUSTL) Qualitative Data Sharing (QDS) project.ICPSR has zipped the 30 interview transcripts in a qualitative data package (DS1), which is available for restricted download.The pre-interview survey data (DS2) has been released as received by the depositor.