Hidden Ethical Challenges in Health Data Infrastructure.

Data infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical considerations, apart from the actions (such as data sharing and data analysis) that it enables. This essay outlines some of these considerations-namely, the ethics of efficiency, the visibility of infrastructure, the power of standards, and the impact of new technologies-in order to invite the bioethics community to participate in conversations about infrastructure, as their expertise is both needed and welcomed.

Clinical and Translational Science Personas: Expansion and use cases.

Twelve evidence-based profiles of roles across the Clinical and Translational Science (CTS) workforce and two patient profiles were developed by CTS Personas collaborators in 2019 as part of the CTSA Program National Center for Data to Health (CD2H). Based on feedback received from the community, CTS Personas team members collaborated to produce five additional Personas to broaden representation of the CTS workforce and enhance the existing portfolio. This paper presents the rationale and methodology used in the latest CTS Personas initiative. This work also includes an implementation scenario incorporating multiple Personas. Using the new National Institutes of Health's (NIH) Data Management and Sharing Policy as an example, we demonstrate how administrators, researchers, support staff, and all CTS collaborators can use the Personas to respond to this new policy while considering the needs of service providers and users, CTS employees with short- and long-term needs, and interdisciplinary perspectives.

The NYU Data Catalog: a modular, flexible infrastructure for data discovery.

OBJECTIVE: Researchers at New York University (NYU) Grossman School of Medicine contacted the Health Sciences Library for help with locating large datasets for reuse. In response, the library developed and maintained the NYU Data Catalog, a public-facing data catalog that has supported not only faculty acquisition of data but also the dissemination of the products of their research in various ways. MATERIALS AND METHODS: The current NYU Data Catalog is built upon the Symfony framework with a tailored metadata schema reflecting the scope of faculty research areas. The project team curates new resources, including datasets and supporting software code, and conducts quarterly and annual evaluations to assess user interactions with the NYU Data Catalog and opportunities for growth. RESULTS: Since its launch in 2015, the NYU Data Catalog underwent a number of changes prompted by an increase in the disciplines represented by faculty contributors. The catalog has also utilized faculty feedback to enhance support of data reuse and researcher collaboration through alterations to its schema, layout, and visibility of records. DISCUSSION: These findings demonstrate the flexibility of data catalogs as a platform for enabling the discovery of disparate sources of data. While not a repository, the NYU Data Catalog is well-positioned to support mandates for data sharing from study sponsors and publishers. CONCLUSION: The NYU Data Catalog makes the most of the data that researchers share and can be harnessed as a modular and adaptable platform to promote data sharing as a cultural practice.

Engaging health sciences librarians on data ethics: case study on a pilot curriculum.

Background: Ethical decision-making regarding data collection, visualization and communication is of growing importance to librarians. Data ethics training opportunities for librarians, however, are uncommon. To fill this gap, librarians at an academic medical center developed a pilot data ethics curriculum for librarians across the US and Canada. Case Presentation: Three data librarians in a health sciences library developed a pilot curriculum to address perceived gaps in librarian training for data ethics. One of the team members had additional academic training in bioethics, which helped to provide an intellectual foundation for this project. The three-module class provided students with an overview of ethical frameworks, skills to apply those frameworks to data issues, and an exploration of data ethics challenges in libraries. Participants from library schools and professional organizations were invited to apply. Twenty-four participants attended the Zoom-based classes and shared feedback through surveys taken after each session and in a focus group after the course's conclusion. Discussion: Responses to the focus group and surveys indicated a high level of student engagement and interest in data ethics. Students also expressed a desire for more time and ways to apply what was learned to their own work. Specifically, participants indicated an interest in dedicating time for networking with other members of their cohort, as well as more extensive discussion of class topics. Several students also suggested creating concrete outputs of their thoughts (e.g., a reflective paper or final project). Finally, student responses expressed a strong interest in mapping ethical frameworks directly to challenges and issues librarians face in the workplace.

Piloting a long-term evaluation of library data workshops.

BACKGROUND: Over four years of hosting library data workshops, we conducted post-workshop evaluation of attendees' satisfaction with the workshops but not longer-term follow-up. To best allocate library resources and most effectively serve the needs of our users, we sought to determine whether our data workshops were impactful and useful to our community. This paper describes a pilot project to evaluate the impact of data workshops at our academic health sciences library. CASE PRESENTATION: We surveyed individuals who signed up for data workshops between 2016 and 2019. Surveys included open-ended and multiple-choice questions, with the goal of having participants describe their motivations for taking the workshop(s) and how they ultimately used what they learned. An analysis of responses using the Applied Thematic Analysis model indicated that the workshops had an impact on the respondents, although the strength of our conclusions is limited by a relatively low response rate. CONCLUSIONS: Survey results indicated that our workshops impacted how researchers at our medical center collect and analyze data, supporting the conclusion that we should concentrate our educational efforts on providing skills-based workshops. The low response rate and time-consuming nature of the analysis point toward several improvements for future evaluation efforts, including better tracking of workshop attendees, a shorter survey with fewer open-ended questions, and survey implementation within one year of the workshop date.

Data Day to Day: building a community of expertise to address data skills gaps in an academic medical center.

BACKGROUND: The New York University Health Sciences Library data services team had developed educational material for research data management and data visualization and had been offering classes at the request of departments, research groups, and training programs, but many members of the medical center were unaware of these library data services. There were also indications of data skills gaps in these subject areas and other data-related topics. CASE PRESENTATION: The data services team enlisted instructors from across the medical center with data expertise to teach in a series of classes hosted by the library. We hosted eight classes branded as a series called "Data Day to Day." Seven instructors from four units in the medical center, including the library, taught the classes. A multipronged outreach approach resulted in high turnout. Evaluations indicated that attendees were very satisfied with the instruction, would use the skills learned, and were interested in future classes. CONCLUSIONS: Data Day to Day met previously unaddressed data skills gaps. Collaborating with outside instructors allowed the library to serve as a hub for a broad range of data instruction and to raise awareness of library services. We plan to offer the series three times in the coming year with an expanding roster of classes.