Accessibility of research data to disabled users has received scant attention in literature and practice. In this paper we briefly survey the current state of accessibility for research data and suggest some first steps that repositories should take to make their holdings more accessible. We then describe in depth how those steps were implemented at the Qualitative Data Repository (QDR), a domain repository for qualitative social-science data. The paper discusses accessibility testing and improvements on the repository and its underlying software, changes to the curation process to improve accessibility, as well as efforts to retroactively improve the accessibility of existing collections. We conclude by describing key lessons learned during this process as well as next steps.
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This content will become publicly available on May 1, 2025
Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository
Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.
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- Award ID(s):
- 2116935
- PAR ID:
- 10528825
- Publisher / Repository:
- Elsevier
- Date Published:
- Journal Name:
- Journal of Pain and Symptom Management
- ISSN:
- 0885-3924
- Subject(s) / Keyword(s):
- Qualitative data data sharing open science data repository palliative care
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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