# Sharing Qualitative Research Data: Identifying and Addressing Ethical and Practical Barriers

> **NIH NIH R01** · WASHINGTON UNIVERSITY · 2020 · $634,126

## Abstract

Project Summary
 This project will identify and address ethical and practical barriers to qualitative data sharing (QDS) in
health sciences research. Qualitative research has unique value in understanding health behaviors and traits
that are stigmatized and hidden such as risk factors for HIV or a genetic propensity to addiction. Accordingly, a
lot of qualitative data are sensitive, and the data are provided within relationships of trust. NIH policy guidance
states that “all data should be considered for data sharing.” Sharing qualitative data offers cost-effective ways
of providing important benefits to science, researchers, and students. However, qualitative research data are
rarely shared and concerns exist regarding participant confidentiality, data ownership, and the time burden
and cost of de-identifying data.
 This project builds logically across three aims culminating in the systematic dissemination of a QDS Toolkit
that includes stakeholder-informed guidelines for QDS and data anonymization support software and data
curation processes that have been refined through a formative evaluation process with qualitative researchers.
 1. We will engage diverse stakeholders to identify ethical and practical barriers to QDS. We will conduct in-
 depth interviews and surveys with qualitative researchers, institutional review board members, data
 curators, and former research participants to explore attitudes toward and recommendations for QDS.
 2. We will conduct a qualitative data sharing trial. Thirty qualitative researchers will deposit data with a
 partner data repository. To reduce the burden of QDS on researchers, we will develop qualitative data
 anonymization support software, guidelines for QDS, and efficient data curation processes. Researchers
 will provide feedback on all of these resources to guide revisions.
 3. We will develop, evaluate, and disseminate a QDS Toolkit. QDS Toolkit content will be based on
 literature reviewers, stakeholder input, and user feedback obtained during formative evaluation of the
 toolkit. We expect it will contain ethical guidance provided through case studies, as well as all materials
 developed through Aims 1 and 2. We will target four groups for dissemination: (a) data repositories; (b)
 qualitative research journals; (c) qualitative textbook authors; and (d) research institutions. For each
 group, we will identify current practices, provide access to the QDS Toolkit, recommend adoption of
 specific practices, and track adoption.
 This project will have a high impact on qualitative health research by increasing transparency and openness,
promoting secondary data analysis, and facilitating research training, while demonstrating respect for
participants, researchers, institutions, and regulations. The QDS Toolkit and all materials developed during
this project will be made publicly available at no cost to users.

## Key facts

- **NIH application ID:** 9966016
- **Project number:** 5R01HG009351-04
- **Recipient organization:** WASHINGTON UNIVERSITY
- **Principal Investigator:** James M Dubois
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $634,126
- **Award type:** 5
- **Project period:** 2017-08-17 → 2023-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9966016

## Citation

> US National Institutes of Health, RePORTER application 9966016, Sharing Qualitative Research Data: Identifying and Addressing Ethical and Practical Barriers (5R01HG009351-04). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/9966016. Licensed CC0.

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