Qualitative Data Repository

Abstract The ontogeny of two stereotypic patterns, wire‐gnawing and jumping, was studied in 24 laboratory mice: six males and six females each of two closely related outbred strains, kept under standard housing conditions, a conventional albino strain (ICR) and a nude, athymic mutant (ICR nu; hereafter: NU). All 24 individuals developed wire‐gnawing after weaning at 20 d of age. In ICR one female and in NU five males and three females additionally developed jumping. ICR developed wire‐gnawing between the age of 20 and 30 d, in NU jumping started at the age of 20 d, but intense jumping and wire‐gnawing comparable to that of ICR did not develop in NU before the age of 40–50 d. Within each strain there was no significant difference between males and females with respect to the development of stereotypic behaviour. By contrast, ICR showed significantly more wire‐gnawing but less jumping than NU. Stereotypy level increased with age up to a mean of 10.7 % of total activity in ICR and up to 7.4 % in NU at 100 d of age. However, there was huge inter‐ and intra‐individual variability with respect to all parameters assessed in this study, i.e. total duration, number of bouts and bout length of the two stereotyped patterns. Wire‐gnawing developed from outside‐directed explorative climbing at the cage lid, whereas the source behaviour pattern (Mason 1991 a, Anim. Behav. 41, 1015–1037) of jumping was outside‐directed explorative rearing at the cage wall. At 20 d of age, before the onset of stereotypy development, ICR showed significantly more climbing but less rearing than NU. Physical retardation of NU at weaning may account for decreased climbing ability during early ontogeny, and hence for the retarded development of wire‐gnawing. The difference in early experience with either of the two patterns rather than genetic effects may be responsible for the qualitative difference between the strains with respect to the form of later stereotypy.

This article presents a practical roadmap for scholarly data repositories to implement data citation in accordance with the Joint Declaration of Data Citation Principles, a synopsis and harmonization of the recommendations of major science policy bodies. The roadmap was developed by the Repositories Expert Group, as part of the Data Citation Implementation Pilot (DCIP) project, an initiative of FORCE11.org and the NIH-funded BioCADDIE ( https://biocaddie.org ) project. The roadmap makes 11 specific recommendations, grouped into three phases of implementation: a) required steps needed to support the Joint Declaration of Data Citation Principles, b) recommended steps that facilitate article/data publication workflows, and c) optional steps that further improve data citation support provided by data repositories. We describe the early adoption of these recommendations 18 months after they have first been published, looking specifically at implementations of machine-readable metadata on dataset landing pages.

BACKGROUND: Trust is essential in patient-physician relationships. Hospitalized patients with substance use disorders (SUDs) often experience stigma and trauma in the hospital, which can impede trust. Little research has explored the role of hospital-based addictions care in creating trusting relationships with patients with SUDs. This study describes how trust in physicians changed among hospitalized people with SUDs who were seen by an interprofessional addiction medicine service. METHODS: We analyzed data from hospitalized patients with SUD seen by an addiction consult service from 2015 to 2018. Participants completed surveys at baseline and 30 to 90 days after hospital discharge. Follow-up assessments included open-ended questions exploring participant experiences with hospitalization and the addiction consult service. We measured provider trust using the Wake Forest Trust scale. We modeled trust trajectories using discrete mixture modeling, and sampled qualitative interviews from those trust trajectories. RESULTS: Of 328 participants with SUD who had prior hospitalizations but had not previously been seen by an addiction consult service, 196 (59.8%) had both baseline and follow-up trust scores. We identified 3 groups of patients: Persistent-Low Trust, Increasing Trust, and Persistent-High Trust and 4 qualitative themes around in-hospital trust: humanizing care, demonstrating addiction expertise, reliability, and granting agency. CONCLUSIONS: Most participants retained or increased to high trust levels after hospitalization with an addiction consult service. Addiction consult services can create environments where healthcare providers build trust with, and humanize care for, hospitalized patients with SUD, and can also mitigate power struggles that hospitalized patients with SUD frequently experience.

A perennial issue of sociological analysis is how to address the details of interaction without acknowledging the structurally broad or the subjectively meaningful contexts within which the details occur. The issue centers on the relation between “how” and “why” questions of social order. This article deals with the issue as it emerges in the methodological debate between conversation analysts and ethnomethodologically oriented ethnographers over how to analyze the contexts of social interaction. Accepting the importance of why questions, it is argued that one's initial move should be to pay close attention to the how's of social interaction–either the local production or the local enactment of contexts. Against those ethnomethodologists who insist on keeping why questions suspended, we accept the utility of raising why questions once how questions have been dealt with.

By encouraging and requiring that authors share their data in order to publish articles, scholarly journals have become an important actor in the movement to improve the openness of data and the reproducibility of research. But how many social science journals encourage or mandate that authors share the data supporting their research findings? How does the share of journal data policies vary by discipline? What influences these journals’ decisions to adopt such policies and instructions? And what do those policies and instructions look like?We discuss the results of our analysis of the instructions and policies of 291 highly-ranked journals publishing social science research, where we studied the contents of journal data policies and instructions across 14 variables, such as when and how authors are asked to share their data, and what role journal ranking and age play in the existence and quality of data policies and instructions. We also compare our results to the results of other studies that have analyzed the policies of social science journals, although differences in the journals chosen and how each study defines what constitutes a data policy limit this comparison.We conclude that a little more than half of the journals in our study have data policies. A greater share of the economics journals have data policies and mandate sharing, followed by political science/international relations and psychology journals.Finally, we use our findings to make several recommendations: Policies should include the terms “data,” “dataset” or more specific terms that make it clear what to make available; policies should include the benefits of data sharing; journals, publishers, and associations need to collaborate more to clarify data policies; and policies should explicitly ask for qualitative data.

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.

<p class="p1">While data sharing is becoming increasingly common in quantitative social inquiry, qualitative data are rarely shared. One factor inhibiting data sharing is a concern about human participant protections and privacy. Protecting the confidentiality and safety of research participants is a concern for both quantitative and qualitative researchers, but it raises specific concerns within the epistemic context of qualitative research. Thus, the applicability of emerging protection models from the quantitative realm must be carefully evaluated for application to the qualitative realm. At the same time, qualitative scholars already employ a variety of strategies for human-participant protection implicitly or informally during the research process. In this practice paper, we assess available strategies for protecting human participants and how they can be deployed. We describe a spectrum of possible data management options, such as de-identification and applying access controls, including some already employed by the Qualitative Data Repository (QDR) in tandem with its pilot depositors. Throughout the discussion, we consider the tension between modifying data or restricting access to them, and retaining their analytic value. We argue that developing explicit guidelines for sharing qualitative data generated through interaction with humans will allow scholars to address privacy concerns and increase the secondary use of their data.

How can authors using many individual pieces of qualitative data throughout a publication make their research transparent? In this paper we introduce Annotation for Transparent Inquiry (ATI), an approach to enhance transparency in qualitative research. ATI allows authors to connect specific passages in their publication with an annotation. These annotations provide additional information relevant to the passage and, when possible, include a link to one or more data sources underlying a claim; data sources are housed in a repository. After describing ATI’s conceptual and technological implementation, we report on its evaluation through a series of workshops conducted by the Qualitative Data Repository (QDR) and present initial results of the evaluation. The article ends with an outlook on next steps for the project.

Abstract This article presents a practical roadmap for scholarly data repositories to implement data citation in accordance with the Joint Declaration of Data Citation Principles, a synopsis and harmonization of the recommendations of major science policy bodies. The roadmap was developed by the Repositories Expert Group, as part of the Data Citation Implementation Pilot (DCIP) project, an initiative of FORCE11.org and the NIH BioCADDIE ( https://biocaddie.org ) program. The roadmap makes 11 specific recommendations, grouped into three phases of implementation: a) required steps needed to support the Joint Declaration of Data Citation Principles, b) recommended steps that facilitate article/data publication workflows, and c) optional steps that further improve data citation support provided by data repositories.

Objectives: The aim of this study was to explore the prognostic impact of clinical factors on the short-term outcomes of renal function (RF) in very elderly patients with acute kidney injury (AKI). Patients and methods: We carried out a retrospective cohort study of only very elderly patients who developed AKI at the geriatric department of a tertiary medical center during the period 2007–2015. All patients with AKI were followed up for 90 days after AKI diagnosis or until death. Survivors were divided into recovery and nonrecovery groups according to their RF 90 days post-AKI. RF recovery was defined as an estimated glomerular filtration rate (eGFR) of ≥60 mL/min/1.73 m 2 . Results: In total, 668 patients (39.0%) developed AKI, and 652 patients were included in the final analysis. The median age of this population was 87 years, with 95.6% being male. The 90-day mortality rate was 33.6%. Of the 433 survivors, 316 (73.0%) recovered to their baseline eGFR. Body mass index (BMI), baseline eGFR, low mean aortic pressure (MAP), low prealbumin level, hypoalbuminemia, oliguria, blood urea nitrogen (BUN) level, and more severe AKI stage were independent risk factors associated with nonrenal recovery or death. AKI etiology, evaluated by peak serum creatinine (SCr) level and the requirement for dialysis, was not associated with nonrenal recovery. Conclusion: Risk factors for the poor outcomes of RF in very elderly patients with AKI were BMI, baseline eGFR, low MAP, low prealbumin level, hypoalbuminemia, oliguria, BUN level, and more severe AKI stage. Identifying risk factors may help to improve patient outcomes. Keywords: acute kidney injury, elderly, prognosis, renal function, risk factors

The discipline of political science has been engaged in discussion about when, why, and how to make scholarship more transparent for at least three decades. This piece argues that qualitative researchers can achieve transparency in diverse ways, using techniques and strategies that allow them to balance and optimize among competing considerations that affect the pursuit of transparency.. We begin by considering the “state of the debate,” briefly outlining the contours of the scholarship on transparency in political and other social sciences, which so far has focussed mostly on questions of “whether” and “what” to share. We investigate competing considerations that researchers have to consider when working towards transparent research. The heart of the piece considers various strategies, illustrated by exemplary applications, for making qualitative research more transparent.

Editorial, concluding that 'the legitimacy of NICE amongst the general public is essential to engender the trust of those financing and using the NHS and to avoid it being undermined or pre-empted by government, in response to public and media concerns. The caricature of NICE as a 'death panel' may appear farcical, yet the political leverage of hope in new drugs is highly potent and capable of undermining any agency which is perceived as threatening it. The power of this message and the multiple layers through which it is infused makes plain the need for it to be countered. NICE requires not only more consistent government backing but also a means by which it can highlight established services which are preserved by its decisions to reject some innovations. Given the increasing financial pressures faced by the NHS, the significance and utility of NICE in regulating cost-effectiveness is greater than ever. Hence, its ability to preserve its authority in the face of strong challenges is a salient issue. The ostensibly scientific basis of NICE's threshold-oriented recommendations has perhaps led NICE to downplay the significance of sociopolitical influences on its activities. NICE must recognise that robust decision-making is only part of the regulatory 'game'. Media and public profile are also vital to its effectiveness.

BACKGROUND AND OBJECTIVES: While content, navigability, and usability are essential qualities of effective Web sites, the health care literature contains limited discussion of these issues. This article describes how knowledge gained through focus groups, Web site searches, and individual interviews were used to develop and improve a health-related Web site. METHODS: We conducted 10 focus groups and searches of existing Web sites in preparation for developing a Web site about colorectal cancer (CRC) screening. We conducted 30 in-depth interviews to assess content, navigation, and usability of a new CRC Web site, using participants recruited from Michigan communities with a low incidence of CRC testing. Targeted participants were 50-70 years of age, had no prior experience with CRC testing, and had variable comfort levels with Internet use. RESULTS: Existing CRC screening Web sites uniformly use user-directed navigation and have little variation in content. Our study participants stimulated revisions in content, navigation, and usability. Revised content factors included comprehension, utility, and appeal. Navigation changes focused on logical transition between sections. Usability changes included user focus and clarity of graphics/ text. CONCLUSIONS: We found focus groups, Web site searches, and individual interviews useful in developing and testing content, navigation, and usability of a CRC screening Web site. These steps provide methodological procedures for developing and revising health-related Web sites.

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.

While data sharing is becoming increasingly common in quantitative social inquiry, qualitative data are rarely shared. One factor inhibiting data sharing is a concern about human participant protections and privacy. Protecting the confidentiality and safety of research participants is a concern for both quantitative and qualitative researchers, but it raises specific concerns within the epistemic context of qualitative research. Thus, the applicability of emerging protection models from the quantitative realm must be carefully evaluated for application to the qualitative realm. At the same time, qualitative scholars already employ a variety of strategies for human-participant protection implicitly or informally during the research process.In this practice paper, we assess available strategies for protecting human participants and how they can be deployed. We describe a spectrum of possible data management options, such as anonymization and applying access controls, including some already employed by the Qualitative Data Repository (QDR) in tandem with its pilot depositors. Throughout the discussion, we consider the tension between modifying data or restricting access to them, and retaining their analytic value. We argue that developing explicit guidelines for sharing qualitative data generated through interaction with humans will allow scholars to address privacy concerns and increase the secondary use of their data.

Background: Transparency is increasingly recognized as an important goal for research. But while tools and guidance for transparency and reproducibility abound for scholars working quantitatively, relatively few such tools exist for qualitative researchers. Methods: This paper describes the development and use of a transparency checklist for qualitative research. The transparency checklist provides qualitative researchers with a comprehensive list of documents and information to collect and archive during the course of a research project and suggestions for which of these can be shared to enhance the transparency of the project. Drawing on the rich tradition of checklists outside of academia, the transparency checklist is built to improve the quality of work and facilitate communication in research teams, rather than serve as a tool for external transparency assessments. Results: We describe the use of the checklist in qualitative research projects conducted at a nonprofit organization conducting policy-driven research on sexual and reproductive health. In practice, the checklist proves valuable not just for planning to make materials and data available, but also both for coordinating and organizing larger, team-based qualitative research projects and for maximizing the transparency of qualitative research for which data cannot be shared.Conclusion: Wider adoption of the checklist has the potential to improve qualitative research by supporting the sharing of data and materials, standardizing rigorous models of data collection and analysis, and by making supporting documents such as consent language and interview guides more broadly available, allowing for improved learning across projects.

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.

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.

The discipline of political science has been engaged in discussion about when, why, and how to make scholarship more open for at least three decades.This piece argues that the best way to resolve our differences and develop appropriate norms and guidelines for making different types of qualitative research more open is to move from “if” to “how” – for individual political scientists to make their work more open – generating examples from which we can learn and on which we can build. We begin by articulating a series of principles that underlie our views on openness. We then consider the “state of the debate,” briefly outlining the contours of the scholarship on openness in political and other social sciences, highlighting the fractured nature of the discussion. The heart of the piece considers various strategies, illustrated by exemplary applications, for making qualitative research more open.

This document provides an overview of the Qualitative Data Repository's (QDR) internal curation process. The process includes standardized steps from depositor contact, file processing procedures and Dataverse repository operations, to publication of the data project and thereafter.