Archives des mots-clés : data sharing

Trust, Respect, and Reciprocity : Informing Culturally Appropriate Data-Sharing Practice in Vietnam

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International science funders and publishers are driving a growing trend in data sharing. There is mounting pressure on researchers in low- and middle-income settings to conform to new sharing policies, despite minimal empirically grounded accounts of the ethical challenges of implementing the policies in these settings.

This study used in-depth interviews and focus group discussions with 48 stakeholders in Vietnam to explore the experiences, attitudes, and expectations that inform ethical and effective approaches to sharing clinical research data. Distinct views on the role of trust, respect, and reciprocity were among those that emerged to inform culturally appropriate best practices. We conclude by discussing the challenges that authors of data-sharing policies should consider in this unique context.

URL : Trust, Respect, and Reciprocity

Alternative location : http://m.jre.sagepub.com/content/10/3/251

Sweat, Skepticism, and Uncharted Territory : A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India

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Efforts to internalize data sharing in research practice have been driven largely by developing international norms that have not incorporated opinions from researchers in low- and middle-income countries. We sought to identify the issues around ethical data sharing in the context of research involving women and children in urban India. We interviewed researchers, managers, and research participants associated with a Mumbai non-governmental organization, as well as researchers from other organizations and members of ethics committees.

We conducted 22 individual semi-structured interviews and involved 44 research participants in focus group discussions. We used framework analysis to examine ideas about data and data sharing in general; its potential benefits or harms, barriers, obligations, and governance; and the requirements for consent. Both researchers and participants were generally in favor of data sharing, although limited experience amplified their reservations. We identified three themes: concerns that the work of data producers may not receive appropriate acknowledgment, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing.

To increase data sharing in India, we need to provide guidelines, protocols, and examples of good practice in terms of consent, data preparation, screening of applications, and what individuals and organizations can expect in terms of validation, acknowledgment, and authorship.

URL : Sweat, Skepticism, and Uncharted Territory

Alternative location : http://m.jre.sagepub.com/content/10/3/239

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research : A Systematic Scoping Review

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There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings.

We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders’ perspectives.

URL : Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research

Alternative location : http://m.jre.sagepub.com/content/10/3/225

Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings

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It is increasingly recognized that effective and appropriate data sharing requires the development of models of good datasharing practice capable of taking seriously both the potential benefits to be gained and the importance of ensuring that the rights and interests of participants are respected and that risk of harms is minimized. Calls for the greater sharing of individual-level data from biomedical and public health research are receiving support among researchers and research funders. Despite its potential importance, data sharing presents important ethical, social, and institutional challenges in low-income settings.

In this article, we report on qualitative research conducted in five low- and middle-income countries exploring the experiences of key research stakeholders and their views about what constitutes good data-sharing practice.

URL : Sharing Public Health Research Data

Alternative location : http://m.jre.sagepub.com/content/10/3/217

Research Data Practices in Veterinary Medicine: A Case Study

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Objective
To determine trends in research data output, reuse, and sharing of the college of veterinary medicine faculty members at a large academic research institution.
Methods
This bibliographic study was conducted by examining original research articles for indication of the types of data produced, as well as evidence that the authors reused data or made provision for sharing their own data. Findings were recorded in the categories of research type, data type, data reuse, data sharing, author collaboration, and grants/funding and were analyzed to determine trends.
Results
A variety of different data types were encountered in this study, even within a single article, resulting primarily from clinical and laboratory animal studies. All of the articles resulted from author collaboration, both within the University of Illinois at Urbana – Champaign, as well as with researchers outside the institution. There was little indication that data was reused, except some instances where the authors acknowledged that data was obtained directly from a colleague. There was even less indication that the research data was shared, either as a supplementary file on the publisher’s website or by submission to a repository, except in the case of genetic data.
Conclusions
Veterinary researchers are prolific producers and users of a wide variety of data. Despite the large amount of collaborative research occurring in veterinary medicine, this study provided little evidence that veterinary researchers are reusing or sharing their data, except in an informal manner. Wider adoption of data management plans may serve to improve researchers’ data management practices.

Research data sharing: Developing a stakeholder-driven model for journal policies

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“Conclusions of research articles depend on bodies of data that cannot be included in articles themselves. To share this data is important for reasons of both transparency and reuse. Science, Technology, and Medicine journals have a role in facilitating sharing, but by what mechanism is not yet clear. The Journal Research Data (JoRD) Project was a JISC (Joint Information Systems Committee)-funded feasibility study on the potential for a central service on journal research data policies. The objectives of the study included identifying the current state of journal data sharing policies and investigating stakeholders’ views and practices. The project confirmed that a large percentage of journals have no data sharing policy and that there are inconsistencies between those that are traceable. This state leaves authors unsure of whether they should share article related data and where and how to deposit those data. In the absence of a consolidated infrastructure to share data easily, a model journal data sharing policy was developed by comparing quantitative information from analyzing existing journal data policies with qualitative data collected from stakeholders. This article summarizes and outlines the process by which the model was developed and presents the model journal data sharing policy.”

URL : http://eprints.nottingham.ac.uk/3185/

A systematic review of barriers to data sharing in public health

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“Background : In the current information age, the use of data has become essential for decision making in public health at the local, national, and global level. Despite a global commitment to the use and sharing of public health data, this can be challenging in reality. No systematic framework or global operational guidelines have been created for data sharing in public health. Barriers at different levels have limited data sharing but have only been anecdotally discussed or in the context of specific case studies. Incomplete systematic evidence on the scope and variety of these barriers has limited opportunities to maximize the value and use of public health data for science and policy.

Methods : We conducted a systematic literature review of potential barriers to public health data sharing. Documents that described barriers to sharing of routinely collected public health data were eligible for inclusion and reviewed independently by a team of experts. We grouped identified barriers in a taxonomy for a focused international dialogue on solutions.

Results : Twenty potential barriers were identified and classified in six categories: technical, motivational, economic, political, legal and ethical. The first three categories are deeply rooted in well-known challenges of health information systems for which structural solutions have yet to be found; the last three have solutions that lie in an international dialogue aimed at generating consensus on policies and instruments for data sharing.

Conclusions : The simultaneous effect of multiple interacting barriers ranging from technical to intangible issues has greatly complicated advances in public health data sharing. A systematic framework of barriers to data sharing in public health will be essential to accelerate the use of valuable information for the global good.”

URL : A systematic review of barriers to data sharing in public health

Alternative URL : http://www.biomedcentral.com/1471-2458/14/1144