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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. 

How do researchers in fieldwork-intensive disciplines protect sensitive data in the field, how do they assess their own practices, and how do they arrive at them? This article reports the results of a qualitative study with 36 semi-structured interviews with qualitative and multi-method researchers in political science and humanitarian aid/migration studies. We find that researchers frequently feel ill-prepared to handle the management of sensitive data in the field and find that formal institutions provide little support. Instead, they use a patchwork of sources to devise strategies for protecting their informants and their data. We argue that this carries substantial risks for the security of the data as well as their potential for later sharing and re-use. We conclude with some suggestions for effectively supporting data management in fieldwork-intensive research without unduly adding to the burden on researchers conducting it.

 

As funder, journal, and disciplinary norms and mandates have foregrounded obligations of data sharing and opportunities for data reuse, the need to plan for and curate data sets that can reach researchers and end-users with disabilities has become even more urgent. We begin by exploring the disability studies literature, describing the need for advocacy and representation of disabled scholars as data creators, subjects, and users. We then survey the landscape of data repositories, curation guidelines, and research-data-related standards, finding little consideration of accessibility for people with disabilities. We suggest three sets of minimal good practices for moving toward truly accessible research data: 1) ensuring Web accessibility for data repositories; 2) ensuring accessibility of common text formats, including those used in documentation; and 3) enhancement of visual and audiovisual materials. We point to some signs of progress in regard to truly accessible data by highlighting exemplary practices by repositories, standards, and data professionals. Accessibility needs to become a mainstream component of curation practice included in every training, manual, and primer.

 

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.