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Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing

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Authors : Michelle M. Mello, Van Lieou, Steven N. Goodman

Background

Sharing of participant-level clinical trial data has potential benefits, but concerns about potential harms to research participants have led some pharmaceutical sponsors and investigators to urge caution. Little is known about clinical trial participants’ perceptions of the risks of data sharing.

Methods

We conducted a structured survey of 771 current and recent participants from a diverse sample of clinical trials at three academic medical centers in the United States. Surveys were distributed by mail (350 completed surveys) and in clinic waiting rooms (421 completed surveys) (overall response rate, 79%).

Results

Less than 8% of respondents felt that the potential negative consequences of data sharing outweighed the benefits. A total of 93% were very or somewhat likely to allow their own data to be shared with university scientists, and 82% were very or somewhat likely to share with scientists in for-profit companies.

Willingness to share data did not vary appreciably with the purpose for which the data would be used, with the exception that fewer participants were willing to share their data for use in litigation.

The respondents’ greatest concerns were that data sharing might make others less willing to enroll in clinical trials (37% very or somewhat concerned), that data would be used for marketing purposes (34%), or that data could be stolen (30%). Less concern was expressed about discrimination (22%) and exploitation of data for profit (20%).

Conclusions

In our study, few clinical trial participants had strong concerns about the risks of data sharing. Provided that adequate security safeguards were in place, most participants were willing to share their data for a wide range of uses. (Funded by the Greenwall Foundation.)

URL : https://www.nejm.org/doi/full/10.1056/NEJMsa1713258

Data management and sharing in neuroimaging: Practices and perceptions of MRI researchers

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Authors : John A. Borghi, Ana E. Van Gulick

Neuroimaging methods such as magnetic resonance imaging (MRI) involve complex data collection and analysis protocols, which necessitate the establishment of good research data management (RDM). Despite efforts within the field to address issues related to rigor and reproducibility, information about the RDM-related practices and perceptions of neuroimaging researchers remains largely anecdotal.

To inform such efforts, we conducted an online survey of active MRI researchers that covered a range of RDM-related topics. Survey questions addressed the type(s) of data collected, tools used for data storage, organization, and analysis, and the degree to which practices are defined and standardized within a research group.

Our results demonstrate that neuroimaging data is acquired in multifarious forms, transformed and analyzed using a wide variety of software tools, and that RDM practices and perceptions vary considerably both within and between research groups, with trainees reporting less consistency than faculty.

Ratings of the maturity of RDM practices from ad-hoc to refined were relatively high during the data collection and analysis phases of a project and significantly lower during the data sharing phase.

Perceptions of emerging practices including open access publishing and preregistration were largely positive, but demonstrated little adoption into current practice.

URL : Data management and sharing in neuroimaging: Practices and perceptions of MRI researchers

DOI : https://doi.org/10.1371/journal.pone.0200562

Unveiling Scholarly Communities over Knowledge Graphs

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Authors : Sahar Vahdati, Guillermo Palma, Rahul Jyoti Nath, Christoph Lange, Sören Auer, Maria-Esther Vidal

Knowledge graphs represent the meaning of properties of real-world entities and relationships among them in a natural way. Exploiting semantics encoded in knowledge graphs enables the implementation of knowledge-driven tasks such as semantic retrieval, query processing, and question answering, as well as solutions to knowledge discovery tasks including pattern discovery and link prediction.

In this paper, we tackle the problem of knowledge discovery in scholarly knowledge graphs, i.e., graphs that integrate scholarly data, and present Korona, a knowledge-driven framework able to unveil scholarly communities for the prediction of scholarly networks.

Korona implements a graph partition approach and relies on semantic similarity measures to determine relatedness between scholarly entities. As a proof of concept, we built a scholarly knowledge graph with data from researchers, conferences, and papers of the Semantic Web area, and apply Korona to uncover co-authorship networks.

Results observed from our empirical evaluation suggest that exploiting semantics in scholarly knowledge graphs enables the identification of previously unknown relations between researchers.

By extending the ontology, these observations can be generalized to other scholarly entities, e.g., articles or institutions, for the prediction of other scholarly patterns, e.g., co-citations or academic collaboration.

URL : https://arxiv.org/abs/1807.06816

Open Education Science

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Authors : Tim van der Zee, Justin Reich

Scientific progress is built on research that is reliable, accurate, and verifiable. The methods and evidentiary reasoning that underlie scientific claims must be available for scrutiny.

Like other fields, the education sciences suffer from problems such as failure to replicate, validity and generalization issues, publication bias, and high costs of access to publications—all of which are symptoms of a nontransparent approach to research. Each aspect of the scientific cycle—research design, data collection, analysis, and publication—can and should be made more transparent and accessible.

Open Education Science is a set of practices designed to increase the transparency of evidentiary reasoning and access to scientific research in a domain characterized by diverse disciplinary traditions and a commitment to impact in policy and practice.

Transparency and accessibility are functional imperatives that come with many benefits for the individual researcher, scientific community, and society at large—Open Education Science is the way forward.

URL : Open Education Science

Alternative location : http://journals.sagepub.com/doi/10.1177/2332858418787466

Scholarly Communication Librarians’ Relationship with Research Impact Indicators: An Analysis of a National Survey of Academic Librarians in the United States

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Authors: Rachel Ann Miles, Stacy Konkiel, Sarah Sutton

INTRODUCTION

Academic librarians, especially in the field of scholarly communication, are often expected to understand and engage with research impact indicators. However, much of the current literature speculates about how academic librarians are using and implementing research impact indicators in their practice.

METHODS

This study analyzed the results from a 2015 survey administered to over 13,000 academic librarians at Carnegie-classified R1 institutions in the United States. The survey concentrated on academic librarians’ familiarity with and usage of research impact indicators.

RESULTS

This study uncovered findings related to academic librarians’ various levels of familiarity with research impact indicators and how they implement and use research impact indicators in their professional development and in their library job duties.

DISCUSSION

In general, academic librarians with regular scholarly communication support duties tend to have higher levels of familiarity of research impact indicators. In general, academic librarians are most familiar with the citation counts and usage statistics and least familiar with altmetrics.

During consultations with faculty, the Journal Impact Factor (JIF) and citation counts are more likely to be addressed than the author h-index, altmetrics, qualitative measures, and expert peer reviews.

The survey results also hint towards a growing interest in altmetrics among academic librarians for their professional advancement.

CONCLUSION

Academic librarians are continually challenged to keep pace with the changing landscape of research impact metrics and research assessment models. By keeping pace and implementing research impact indicators in their own practices, academic librarians can provide a crucial service to the wider academic community.

URL : Scholarly Communication Librarians’ Relationship with Research Impact Indicators: An Analysis of a National Survey of Academic Librarians in the United States

DOI : http://doi.org/10.7710/2162-3309.2212

Challenges of Adopting Open Educational Resources (OER) in Kenyan Secondary Schools: The Case of Open Resources for English Language Teaching (ORELT)

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Authors : Daniel Ochieng Orwenjo, Fridah Kanana Erastus

Kenya, like many African countries, has faced enormous challenges in the production of and access to quality relevant teaching and learning materials and resources in her primary and secondary school classrooms.

This has been occasioned by a plethora of factors which include, but are not limited to a lack of finances, tradition, competence, and experience to develop such resources. Such a situation has persisted despite the existence and availability of many Open Educational Resources (OERs) that have been developed by many education stakeholders at enormous costs.

Such freely available resources could potentially improve the quality of existing resources or help to develop new courses. Yet, their uptake and reuse in secondary and primary schools in Kenya continues to be very low. This paper reports the findings of a study in which Open Resources for English Language Teaching (ORELT) developed by the Commonwealth of Learning (COL), Canada, were piloted in sampled fifty (50) Kenyan secondary schools.

The study applied the Model 1 – Distance and Dependence (Zhao et al 2002) model to investigate the challenges that hinder instructors to adopt and use ORELT materials. The study reported that poor infrastructure, negative attitudes, lack of ICT competencies, and other skill gaps among teachers and lack of administrative support are some of the implementation challenges that have continued to dog the implementation, adoption and use of OERs in Kenyan schools.

The findings of the present study will go a long way in providing useful insights to the developers of OERs and Kenyan education stakeholders in devising strategies of maximum utilisation of OERs in the Kenyan school system.

URL : Challenges of Adopting Open Educational Resources (OER) in Kenyan Secondary Schools: The Case of Open Resources for English Language Teaching (ORELT)

Alternative location : http://www.jl4d.org/index.php/ejl4d/article/view/282

Challenges and opportunities in the evolving digital preservation landscape: reflections from Portico

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Authors: Kate Wittenberg, Sarah Glasser, Amy Kirchhoff, Sheila Morrissey, Stephanie Orphan

There has been tremendous growth in the amount of digital content created by libraries, publishers, cultural institutions and the general public. While there are great benefits to having content available in digital form, digital objects can be extremely short-lived unless proper attention is paid to preservation.

Reflecting on our experience with the digital preservation service Portico, we provide background on Portico’s history and evolving practice of sustainable preservation of the digital artifacts of scholarly communications.

We also provide an overview of the digital preservation landscape as we see it now, with some thoughts on current requirements for preservation, and thoughts on the opportunities and challenges that lie ahead.

URL : Challenges and opportunities in the evolving digital preservation landscape: reflections from Portico

DOI : http://doi.org/10.1629/uksg.421