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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.

 

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. 

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. 

Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants’ willingness to, understanding of, and motivations for data sharing. As part of a larger qualitative study on abortion reporting, we conducted interviews with 64 cisgender women in two states in early 2020 and asked for consent to share de-identified data. At the end of interviews, we asked participants to reflect on their motivations for agreeing or declining to share their data. The vast majority of respondents consented to data sharing and reported that helping others was a primary motivation for agreeing to share their data. However, a substantial number of participants showed a limited understanding of the concept of “data sharing.” Additional research is needed on how to improve participants’ understanding of data sharing and thus ensure fully informed consent. 

In this short practice paper, we introduce the public version of the Qualitative Data Repository’s (QDR) Curation Handbook. The Handbook documents and structures curation practices at QDR. We describe the background and genesis of the Handbook and highlight some of its key content. 

The discipline of political science has been engaged in vibrant debate about research transparency for more than three decades. Over the last ten years, scholars who generate, collect, interpret, and analyze qualitative data have become increasingly involved in these discussions. The debate has played out across conference panels, coordinated efforts such as the Qualitative Transparency Deliberations (Büthe et al. 2021), articles in a range of journals, and symposia in outlets such as PS: Political Science and Politics, Security Studies, the newsletter of the Comparative Politics section of the American Political Science Association (APSA), and, indeed, QMMR. Until recently, much of the dialogue has been conducted in the abstract. Scholars have thoroughly considered the questions of whether political scientists who generate and employ qualitative data and methods can and should seek to make their work more transparent, what information they should share about data generation and analysis, and which (if any) data they should make accessible in pursuit of transparency.