scholarly journals Ethics in Data Sharing: Developing a Model for Best Practice

2014 ◽  
Author(s):  
Sven Dietrich ◽  
Jeroen Van Der Ham ◽  
Aiko Pras ◽  
Roland Van Rijswijk Deij ◽  
Darren Shou ◽  
...  
Keyword(s):  
Data Sharing ◽  
Best Practice

scholarly journals A DIGE study on the effects of salbutamol on the rat muscle proteome - an exemplar of best practice for data sharing in proteomics

2011 ◽  
Vol 4 (1) ◽  
Author(s):  
Jenna Kenyani ◽  
J Alberto Medina-Aunon ◽  
Salvador Martinez-Bartolomé ◽  
Juan-Pablo Albar ◽  
Jonathan M Wastling ◽  
...  
Keyword(s):  
Data Sharing ◽  
Best Practice ◽  
Rat Muscle ◽  
Muscle Proteome

scholarly journals Understanding barriers to linking novel consumer and lifestyle data for health research, results from the LifeInfo Survey: a topic modelling approach (Preprint)

2020 ◽  
Author(s):  
Holly Clarke ◽  
Stephen Clark ◽  
Mark Birkin ◽  
Heather Iles-Smith ◽  
Adam Glaser ◽  
...  
Keyword(s):  
Data Sharing ◽  
Large Scale ◽  
Best Practice ◽  
Latent Dirichlet Allocation ◽  
Data Linkage ◽  
Public Attitudes ◽  
Future Research ◽  
Store Loyalty ◽  
Topic Modelling ◽  
Personal Privacy

BACKGROUND Novel consumer and lifestyle data, for example those collected by supermarket loyalty cards or mobile phone exercise tracking apps, offer numerous benefits for researchers wishing to understand diet and exercise related risk factors for diseases. Yet, limited research has addressed public attitudes towards linking these data with individual health records for research purposes. OBJECTIVE The aim of this research was to identify key barriers for data linkage and recommend safeguards and procedures that would encourage individuals to share these data for potential future research. METHODS The LifeInfo Survey consulted the public on their attitudes towards sharing consumer and lifestyle data for research purposes. Where barriers to data sharing existed, participants provided unstructured survey responses detailing what would make them more likely to share data for linkage with their health record in the future. The topic modelling technique Latent Dirichlet Allocation (LDA) was used to analyse these textual responses to uncover common thematic topics within the texts. RESULTS Participants provided responses related to sharing their store loyalty card data (n = 2,338) and health/fitness app data (n = 1,531). Key barriers to data sharing identified through topic modelling included: data safety and security, personal privacy, requirements of further information, fear of data being accessed by others, problems with data accuracy, not understanding the reason for data linkage and not using data production services. We provide recommendations for addressing these issues to establish best practice for future researchers wishing to utilise these data. CONCLUSIONS This study formulates large-scale consultation of public attitudes towards data linkage of this kind, as such, it is an important first step in understanding and addressing barriers to participation for research utilising novel consumer and lifestyle data.

scholarly journals The History, Advocacy and Efficacy of Data Management Plans

2018 ◽  
Author(s):  
Nicholas Smale ◽  
Kathryn Unsworth ◽  
Gareth Denyer ◽  
Daniel Barr
Keyword(s):  
Data Management ◽  
Data Sharing ◽  
Best Practice ◽  
Research Data ◽  
Research Management ◽  
Extensive Literature ◽  
Multiple Use ◽  
Funding Body ◽  
Management Plans ◽  
Recent Developments

AbstractData management plans (DMPs) have increasingly been encouraged as a key component of institutional and funding body policy. Although DMPs necessarily place administrative burden on researchers, proponents claim that DMPs have myriad benefits, including enhanced research data quality, increased rates of data sharing, and institutional planning and compliance benefits.In this manuscript, we explore the international history of DMPs and describe institutional and funding body DMP policy. We find that economic and societal benefits from presumed increased rates of data sharing was the original driver of mandating DMPs by funding bodies. Today, 86% of UK Research Councils and 63% of US funding bodies require submission of a DMP with funding applications. Given that no major Australian funding bodies require DMP submission, it is of note that 37% of Australian universities have taken the initiative to internally mandate DMPs.Institutions both within Australia and internationally frequently promote the professional benefits of DMP use, and endorse DMPs as ‘best practice’. We analyse one such typical DMP implementation at a major Australian institution, finding that DMPs have low levels of apparent translational value. Indeed, an extensive literature review suggests there is very limited published systematic evidence that DMP use has any tangible benefit for researchers, institutions or funding bodies.We are therefore led to question why DMPs have become the go-to tool for research data professionals and advocates of good data practice. By delineating multiple use-cases and highlighting the need for DMPs to be fit for intended purpose, we question the view that a good DMP is necessarily that which encompasses the entire data lifecycle of a project. Finally, we summarise recent developments in the DMP landscape, and note a positive shift towards evidence-based research management through more researcher-centric, educative, and integrated DMP services.

scholarly journals Increasing best practice data sharing at PLOS Pathogens

2021 ◽  
Vol 17 (11) ◽  
pp. e1010021
Author(s):  
Lauren Cadwallader ◽  
Kasturi Haldar ◽  
Michael H. Malim
Keyword(s):  
Data Sharing ◽  
Best Practice

scholarly journals A Review of the History, Advocacy and Efficacy of Data Management Plans

1970 ◽  
Vol 15 (1) ◽  
pp. 30
Author(s):  
Nicholas Andrew Smale ◽  
Kathryn Unsworth ◽  
Gareth Denyer ◽  
Elise Magatova ◽  
Daniel Barr
Keyword(s):  
Data Management ◽  
Data Sharing ◽  
Best Practice ◽  
Research Data ◽  
Research Management ◽  
Extensive Literature ◽  
Multiple Use ◽  
Funding Body ◽  
Management Plans ◽  
Recent Developments

Data management plans (DMPs) have increasingly been encouraged as a key component of institutional and funding body policy. Although DMPs necessarily place administrative burden on researchers, proponents claim that DMPs have myriad benefits, including enhanced research data quality, increased rates of data sharing, and institutional planning and compliance benefits. In this article, we explore the international history of DMPs and describe institutional and funding body DMP policy. We find that economic and societal benefits from presumed increased rates of data sharing was the original driver of mandating DMPs by funding bodies. Today, 86% of UK Research Councils and 63% of US funding bodies require submission of a DMP with funding applications. Given that no major Australian funding bodies require DMP submission, it is of note that 37% of Australian universities have taken the initiative to internally mandate DMPs. Institutions both within Australia and internationally frequently promote the professional benefits of DMP use, and endorse DMPs as ‘best practice’. We analyse one such typical DMP implementation at a major Australian institution, finding that DMPs have low levels of apparent translational value. Indeed, an extensive literature review suggests there is very limited published systematic evidence that DMP use has any tangible benefit for researchers, institutions or funding bodies. We are therefore led to question why DMPs have become the go-to tool for research data professionals and advocates of good data practice. By delineating multiple use-cases and highlighting the need for DMPs to be fit for intended purpose, we question the view that a good DMP is necessarily that which encompasses the entire data lifecycle of a project. Finally, we summarise recent developments in the DMP landscape, and note a positive shift towards evidence-based research management through more researcher-centric, educative, and integrated DMP services.

scholarly journals KINGDOM OF SAUDI ARABIA GEOSPATIAL INFORMATION INFRASTRUCTURE – AN INITIAL STUDY

2015 ◽  
Vol XL-2/W4 ◽  
pp. 95-99 ◽  
Author(s):  
S. H. Alsultan ◽  
A. A. Rahman
Keyword(s):  
Information System ◽  
Saudi Arabia ◽  
Geographic Information System ◽  
Data Sharing ◽  
Best Practice ◽  
Organization Structure ◽  
Initial Study ◽  
National Committee ◽  
Kingdom Of Saudi Arabia ◽  
Geospatial Information

This paper reviews the current Geographic Information System (Longley et al.) implementation and status in the Kingdom of Saudi Arabia (KSA). Based on the review, several problems were identified and discussed. The characteristic of these problems show that the country needs a national geospatial centre. As a new initiative for a national geospatial centre, a study is being conducted especially on best practice from other countries, availability of national committee for standards and policies on data sharing, and the best proposed organization structure inside the administration for the KSA. The study also covers the degree of readiness and awareness among the main GIS stakeholders within the country as well as private parties. At the end of this paper, strategic steps for the national geospatial management centre were proposed as the initial output of the study.

scholarly journals Big Data, Big Responsibility! Building best-practice privacy strategies into a large-scale neuroinformatics platform

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Christina Popovich ◽  
Francis Jeanson ◽  
Brendan Behan ◽  
Shannon Lefaivre ◽  
Aparna Shukla
Keyword(s):  
Big Data ◽  
Data Sharing ◽  
Patient Information ◽  
Neurological Disorders ◽  
Large Scale ◽  
Best Practice ◽  
Patient Data ◽  
Multidimensional Data ◽  
Neuroscience Research ◽  
Secure Data

ABSTRACT ObjectiveThe Ontario Brain Institute (OBI) has begun to catalyze scientific discovery in the field of neuroscience through its’ large-scale informatics platform, known as Brain-CODE (Centre for Ontario Data Exploration). Brain-CODE manages the acquisition, storage, processing, and analytics of multidimensional data collected from patients with a variety of brain disorders. Our vision is for the platform to act as an informatics catalyst; encouraging multidisciplinary research collaboration, data integration, and innovation in neuroscience research. Brain-CODE’s infrastructure was designed with best-practice privacy strategies built at the forefront to enable secure data capture of sensitive patient information in a manner that abides by government legislation while fostering data sharing and linking opportunities. ApproachPrivacy and security features have been incorporated into the very foundation of Brain-CODE’s comprehensive guidelines, which are reinforced by our state-of-the-art approaches to keep patient data safe. To ensure clarity for study participants, we have developed standard consent language outlining how sensitive patient data will be collected, entered, de-identified, and shared using Brain-CODE. Moreover, our tiered approach to data accessibility enables the storage of encrypted Ontario Health Card Numbers as well as other patient information, secure long-term storage of de-identified data, and data sharing opportunities by request from third parties following risk-based analysis re-identification techniques. OBI has also established a comprehensive Information Security Policy and Informatics Governance Policies, as well as a carried out a Privacy Impact Assessment and Threat Risk Assessment for Brain-CODE. ResultsBrain-CODE is proudly named a "Privacy by Design" Ambassador by the Office of the Information and Privacy Commissioner of Ontario, Canada. Moreover, approximately 200 neuroscience researchers and 35 institutions from across Canada have adopted our standard consent language to enable secure data sharing within and across neurological disorders as well as linkage opportunities with national and international databases in a secure environment. ConclusionOBI’s rigorous approach to data sharing in the field of neuroscience maintains the accessibility of research data for big discoveries without compromising patient privacy and security. We believe that Brain-CODE is a powerful and advantageous tool; moving neuroscience research from independent silos to an integrative system approach for improving patient health. OBI’s vision for improved brain health for patients living with neurological disorders paired with Brain-CODE’s best-practice strategies in privacy protection of patient data offer a novel and innovative approach to “big data” initiatives aimed towards improving public health and society world-wide.

scholarly journals Data sharing and outbreaks: best practice exemplified

The Lancet ◽  
2020 ◽  
Vol 395 (10223) ◽  
pp. 469-470 ◽  
Author(s):  
David L Heymann
Keyword(s):  
Data Sharing ◽  
Best Practice

Managing and sharing experimental data: standards, tools and pitfalls

2008 ◽  
Vol 36 (1) ◽  
pp. 33-36 ◽  
Author(s):  
Norman W. Paton
Keyword(s):  
Experimental Data ◽  
Data Sharing ◽  
Best Practice ◽  
Life Sciences ◽  
Integrated Analysis ◽  
Data Standards ◽  
Systematic Description ◽  
Levels Of Detail ◽  
Validation Of Results

Experimental processes in the life sciences are becoming increasingly complex. As a result, recording, archiving and sharing descriptions of these processes and of the results of experiments is becoming ever more challenging. However, validation of results, sharing of best practice and integrated analysis all require systematic description of experiments at carefully determined levels of detail. The present paper discusses issues associated with the management of experimental data in the life sciences, including: the different tasks that experimental data and metadata can support, the role of standards in informing data sharing and archiving, and the development of effective databases and tools, building on these standards.

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