Archives des mots-clés : data sharing

The Landscape of Rights and Licensing Initiatives for Data Sharing

Posté le par

Authors : Sam Grabus, Jane Greenberg

Over the last twenty years, a wide variety of resources have been developed to address the rights and licensing problems inherent with contemporary data sharing practices.

The landscape of developments is this area is increasingly confusing and difficult to navigate, due to the complexity of intellectual property and ethics issues associated with sharing sensitive data.

This paper seeks to address this challenge, examining the landscape and presenting a Version 1.0 directory of resources. A multi-method study was pursued, with an environmental scan examining 20 resources, resulting in three high-level categories: standards, tools, and community initiatives; and a content analysis revealing the subcategories of rights, licensing, metadata & ontologies.

A timeline confirms a shift in licensing standardization priorities from open data to more nuanced and technologically robust solutions, over time, to accommodate for more sensitive data types.

This paper reports on the research undertaking, and comments on the potential for using license-specific metadata supplements and developing data-centric rights and licensing ontologies.

URL : The Landscape of Rights and Licensing Initiatives for Data Sharing

DOI : http://doi.org/10.5334/dsj-2019-029

Implementing publisher policies that inform, support and encourage authors to share data: two case studies

Posté le par

Authors: Leila Jones, Rebecca Grant, Iain Hrynaszkiewicz

Open research data is one of the key areas in the expanding open scholarship movement. Scholarly journals and publishers find themselves at the heart of the shift towards openness, with recent years seeing an increase in the number of scholarly journals with data-sharing policies aiming to increase transparency and reproducibility of research.

In this article we present two case studies which examine the experiences that two leading academic publishers, Taylor & Francis and Springer Nature, have had in rolling out data-sharing policies.

We illustrate some of the considerations involved in providing consistent policies across journals of many disciplines, reflecting on successes and challenges.

URL : Implementing publisher policies that inform, support and encourage authors to share data: two case studies

DOI : http://doi.org/10.1629/uksg.463

Responsible data sharing in international health research: a systematic review of principles and norms

Posté le par

Authors : Shona Kalkman, Menno Mostert, Christoph Gerlinger, Johannes J. M. van Delden, Ghislaine J. M. W. van Thiel

Background

Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development.

Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing.

Despite the recent adoption of the EU General Data Protection Regulation (GDPR), the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance framework, we set out to explore relevant ethical principles and norms.

Methods

We performed a systematic review of literature and ethical guidelines for principles and norms pertaining to data sharing for international health research.

Results

We observed an abundance of principles and norms with considerable convergence at the aggregate level of four overarching themes: societal benefits and value; distribution of risks, benefits and burdens; respect for individuals and groups; and public trust and engagement.

However, at the level of principles and norms we identified substantial variation in the phrasing and level of detail, the number and content of norms considered necessary to protect a principle, and the contextual approaches in which principles and norms are used.

Conclusions

While providing some helpful leads for further work on a coherent governance framework for data sharing, the current collection of principles and norms prompts important questions about how to streamline terminology regarding de-identification and how to harmonise the identified principles and norms into a coherent governance framework that promotes data sharing while securing public trust.

URL : Responsible data sharing in international health research: a systematic review of principles and norms

DOI : https://doi.org/10.1186/s12910-019-0359-9

The Time Efficiency Gain in Sharing and Reuse of Research Data

Posté le par

Author: Tessa E. Pronk

Among the frequently stated benefits of sharing research data are time efficiency or increased productivity. The assumption is that reuse or secondary use of research data saves researchers time in not having to produce data for a publication themselves.

This can make science more efficient and productive. However, if there is no reuse, time costs in making data available for reuse will have been made with no return on this investment.

In this paper a mathematical model is used to calculate the break-even point for time spent sharing in a scientific community, versus time gain by reuse. This is done for several scenarios; from simple to complex datasets to share and reuse, and at different sharing rates.

The results indicate that sharing research data can indeed cause an efficiency revenue for the scientific community. However, this is not a given in all modeled scenarios.

The scientific community with the lowest reuse needed to reach a break-even point is one that has few sharing researchers and low time investments for sharing and reuse.

This suggests it would be beneficial to have a critical selection of datasets that are worth the effort to prepare for reuse in other scientific studies. In addition, stimulating reuse of datasets in itself would be beneficial to increase efficiency in scientific communities.

URL : The Time Efficiency Gain in Sharing and Reuse of Research Data

DOI : http://doi.org/10.5334/dsj-2019-010

Research data management in the French National Research Center (CNRS)

Posté le par

Authors : Joachim Schöpfel, Coline Ferrant, Francis Andre, Renaud Fabre

Purpose

The purpose of this paper is to present empirical evidence on the opinion and behaviour of French scientists (senior management level) regarding research data management (RDM).

Design/methodology/approach

The results are part of a nationwide survey on scientific information and documentation with 432 directors of French public research laboratories conducted by the French Research Center CNRS in 2014.

Findings

The paper presents empirical results about data production (types), management (human resources, IT, funding, and standards), data sharing and related needs, and highlights significant disciplinary differences.

Also, it appears that RDM and data sharing is not directly correlated with the commitment to open access. Regarding the FAIR data principles, the paper reveals that 68 per cent of all laboratory directors affirm that their data production and management is compliant with at least one of the FAIR principles.

But only 26 per cent are compliant with at least three principles, and less than 7 per cent are compliant with all four FAIR criteria, with laboratories in nuclear physics, SSH and earth sciences and astronomy being in advance of other disciplines, especially concerning the findability and the availability of their data output.

The paper concludes with comments about research data service development and recommendations for an institutional RDM policy.

Originality/value

For the first time, a nationwide survey was conducted with the senior research management level from all scientific disciplines. Surveys on RDM usually assess individual data behaviours, skills and needs. This survey is different insofar as it addresses institutional and collective data practice.

The respondents did not report on their own data behaviours and attitudes but were asked to provide information about their laboratory. The response rate was high (>30 per cent), and the results provide good insight into the real support and uptake of RDM by senior research managers who provide both models (examples for good practice) and opinion leadership.

URL : https://hal.univ-lille3.fr/hal-01728541/

Towards a culture of open science and data sharing in health and medical research

Posté le par

Author : Anisa Rowhani-Farid

This thesis investigated the factors that contribute to the cultural shift towards open science and data sharing in health and medical research, with a focus on the role health and medical journals play.

The findings of this research demonstrate that journal data sharing policies are not effective and that journals do not currently provide incentives for sharing.

This study contributed to the movement towards more reproducible research by providing empirical evidence for the strengthening of journal data sharing policies and the adoption of an incentive for open research.

DOI : https://doi.org/10.5204/thesis.eprints.119697

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

Posté le par

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