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Sharing Research Data
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Book Synopsis Managing and Sharing Research Data by : Louise Corti
Download or read book Managing and Sharing Research Data written by Louise Corti and published by SAGE. This book was released on 2014-02-04 with total page 274 pages. Available in PDF, EPUB and Kindle. Book excerpt: Research funders in the UK, USA and across Europe are implementing data management and sharing policies to maximize openness of data, transparency and accountability of the research they support. Written by experts from the UK Data Archive with over 20 years experience, this book gives post-graduate students, researchers and research support staff the data management skills required in today’s changing research environment. The book features guidance on: how to plan your research using a data management checklist how to format and organize data how to store and transfer data research ethics and privacy in data sharing and intellectual property rights data strategies for collaborative research how to publish and cite data how to make use of other people’s research data, illustrated with six real-life case studies of data use.
Book Synopsis Sharing Research Data by : National Research Council
Download or read book Sharing Research Data written by National Research Council and published by National Academies Press. This book was released on 1985-01-01 with total page 233 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Sharing Clinical Research Data by : Institute of Medicine
Download or read book Sharing Clinical Research Data written by Institute of Medicine and published by National Academies Press. This book was released on 2013-06-07 with total page 157 pages. Available in PDF, EPUB and Kindle. Book excerpt: Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could improve public health, enhance patient safety, and spur drug development. Data sharing can also increase public trust in clinical trials and conclusions derived from them by lending transparency to the clinical research process. Much of this information, however, is never shared. Retention of clinical research data by investigators and within organizations may represent lost opportunities in biomedical research. Despite the potential benefits that could be accrued from pooling and analysis of shared data, barriers to data sharing faced by researchers in industry include concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation, as well as a desire to protect confidential commercial information. Academic partners face significant cultural barriers to sharing data and participating in longer term collaborative efforts that stem from a desire to protect intellectual autonomy and a career advancement system built on priority of publication and citation requirements. Some barriers, like the need to protect patient privacy, pre- sent challenges for both sectors. Looking ahead, there are also a number of technical challenges to be faced in analyzing potentially large and heterogeneous datasets. This public workshop focused on strategies to facilitate sharing of clinical research data in order to advance scientific knowledge and public health. While the workshop focused on sharing of data from preplanned interventional studies of human subjects, models and projects involving sharing of other clinical data types were considered to the extent that they provided lessons learned and best practices. The workshop objectives were to examine the benefits of sharing of clinical research data from all sectors and among these sectors, including, for example: benefits to the research and development enterprise and benefits to the analysis of safety and efficacy. Sharing Clinical Research Data: Workshop Summary identifies barriers and challenges to sharing clinical research data, explores strategies to address these barriers and challenges, including identifying priority actions and "low-hanging fruit" opportunities, and discusses strategies for using these potentially large datasets to facilitate scientific and public health advances.
Book Synopsis Sharing Clinical Trial Data by : Institute of Medicine
Download or read book Sharing Clinical Trial Data written by Institute of Medicine and published by National Academies Press. This book was released on 2015-04-20 with total page 304 pages. Available in PDF, EPUB and Kindle. Book excerpt: Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research--from funders, to researchers, to journals, to physicians, and ultimately, to patients.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309378125 Total Pages :102 pages Book Rating :4.3/5 (93 download)
Book Synopsis Sharing Research Data to Improve Public Health in Africa by : National Academies of Sciences, Engineering, and Medicine
Download or read book Sharing Research Data to Improve Public Health in Africa written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2015-09-18 with total page 102 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :030937085X Total Pages :115 pages Book Rating :4.3/5 (93 download)
Book Synopsis Principles and Obstacles for Sharing Data from Environmental Health Research by : National Academies of Sciences, Engineering, and Medicine
Download or read book Principles and Obstacles for Sharing Data from Environmental Health Research written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2016-05-29 with total page 115 pages. Available in PDF, EPUB and Kindle. Book excerpt: On March 19, 2014, the National Academies of Sciences, Engineering, and Medicine held a workshop on the topic of the sharing of data from environmental health research. Experts in the field of environmental health agree that there are benefits to sharing research data, but questions remain regarding how to effectively make these data available. The sharing of data derived from human subjects-making them both transparent and accessible to others-raises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. The workshop participants explored key concerns, principles, and obstacles to the responsible sharing of data used in support of environmental health research and policy making while focusing on protecting the privacy of human subjects and addressing the concerns of the research community. Principles and Obstacles for Sharing Data from Environmental Health Research summarizes the presentations and discussions from the workshop.
Book Synopsis Sharing Linked Data for Health Research by : Carolyn Adams
Download or read book Sharing Linked Data for Health Research written by Carolyn Adams and published by Cambridge University Press. This book was released on 2022-06-09 with total page 279 pages. Available in PDF, EPUB and Kindle. Book excerpt: Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address “wicked problems” in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.
Book Synopsis Managing Research Data by : Graham Pryor
Download or read book Managing Research Data written by Graham Pryor and published by Facet Publishing. This book was released on 2012-01-20 with total page 257 pages. Available in PDF, EPUB and Kindle. Book excerpt: This title defines what is required to achieve a culture of effective data management offering advice on the skills required, legal and contractual obligations, strategies and management plans and the data management infrastructure of specialists and services. Data management has become an essential requirement for information professionals over the last decade, particularly for those supporting the higher education research community, as more and more digital information is created and stored. As budgets shrink and funders of research demand evidence of value for money and demonstrable benefits for society, there is increasing pressure to provide plans for the sustainable management of data. Ensuring that important data remains discoverable, accessible and intelligible and is shared as part of a larger web of knowledge will mean that research has a life beyond its initial purpose and can offer real utility to the wider community. This edited collection, bringing together leading figures in the field from the UK and around the world, provides an introduction to all the key data issues facing the HE and information management communities. Each chapter covers a critical element of data management: • Why manage research data? • The lifecycle of data management • Research data policies: principles, requirements and trends • Sustainable research data • Data management plans and planning • Roles and responsibilities – libraries, librarians and data • Research data management: opportunities and challenges for HEIs • The national data centres • Contrasting national research data strategies: Australia and the USA • Emerging infrastructure and services for research data management and curation in the UK and Europe Readership: This is essential reading for librarians and information professionals working in the higher education sector, the research community, policy makers and university managers. It will also be a useful introduction for students taking courses in information management, archivists and national library services.
Book Synopsis Data and Information in Online Environments by : Edgar Bisset Álvarez
Download or read book Data and Information in Online Environments written by Edgar Bisset Álvarez and published by Springer Nature. This book was released on 2021-06-14 with total page 479 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book constitutes the refereed post-conference proceedings of the Second International Conference on Data Information in Online Environments, DIONE 2021, which took place in March 2021. Due to COVID-19 pandemic the conference was held virtually. DIONE 2021 presents theoretical proposals and practical solutions in the treatment, processing and study of data and information produced in online environments, the latest trends in the analysis of network information, media metrics social, data processing technologies and open science. The 40 revised full papers were carefully reviewed and selected from 86 submissions. The papers are grouped in thematical sessions on evaluation of science in social networking environment; scholarly publishing and online communication; and education in online environments.
Book Synopsis Sharing Publication-Related Data and Materials by : National Research Council
Download or read book Sharing Publication-Related Data and Materials written by National Research Council and published by National Academies Press. This book was released on 2003-04-17 with total page 120 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biologists communicate to the research community and document their scientific accomplishments by publishing in scholarly journals. This report explores the responsibilities of authors to share data, software, and materials related to their publications. In addition to describing the principles that support community standards for sharing different kinds of data and materials, the report makes recommendations for ways to facilitate sharing in the future.
Book Synopsis Fundamentals of Clinical Data Science by : Pieter Kubben
Download or read book Fundamentals of Clinical Data Science written by Pieter Kubben and published by Springer. This book was released on 2018-12-21 with total page 219 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book comprehensively covers the fundamentals of clinical data science, focusing on data collection, modelling and clinical applications. Topics covered in the first section on data collection include: data sources, data at scale (big data), data stewardship (FAIR data) and related privacy concerns. Aspects of predictive modelling using techniques such as classification, regression or clustering, and prediction model validation will be covered in the second section. The third section covers aspects of (mobile) clinical decision support systems, operational excellence and value-based healthcare. Fundamentals of Clinical Data Science is an essential resource for healthcare professionals and IT consultants intending to develop and refine their skills in personalized medicine, using solutions based on large datasets from electronic health records or telemonitoring programmes. The book’s promise is “no math, no code”and will explain the topics in a style that is optimized for a healthcare audience.
Book Synopsis The Open Handbook of Linguistic Data Management by : Andrea L. Berez-Kroeker
Download or read book The Open Handbook of Linguistic Data Management written by Andrea L. Berez-Kroeker and published by MIT Press. This book was released on 2022-01-18 with total page 687 pages. Available in PDF, EPUB and Kindle. Book excerpt: A guide to principles and methods for the management, archiving, sharing, and citing of linguistic research data, especially digital data. "Doing language science" depends on collecting, transcribing, annotating, analyzing, storing, and sharing linguistic research data. This volume offers a guide to linguistic data management, engaging with current trends toward the transformation of linguistics into a more data-driven and reproducible scientific endeavor. It offers both principles and methods, presenting the conceptual foundations of linguistic data management and a series of case studies, each of which demonstrates a concrete application of abstract principles in a current practice. In part 1, contributors bring together knowledge from information science, archiving, and data stewardship relevant to linguistic data management. Topics covered include implementation principles, archiving data, finding and using datasets, and the valuation of time and effort involved in data management. Part 2 presents snapshots of practices across various subfields, with each chapter presenting a unique data management project with generalizable guidance for researchers. The Open Handbook of Linguistic Data Management is an essential addition to the toolkit of every linguist, guiding researchers toward making their data FAIR: Findable, Accessible, Interoperable, and Reusable.
Book Synopsis Research Data Management by : Joyce M. Ray
Download or read book Research Data Management written by Joyce M. Ray and published by Purdue University Press. This book was released on 2014 with total page 448 pages. Available in PDF, EPUB and Kindle. Book excerpt: It has become increasingly accepted that important digital data must be retained and shared in order to preserve and promote knowledge, advance research in and across all disciplines of scholarly endeavor, and maximize the return on investment of public funds. To meet this challenge, colleges and universities are adding data services to existing infrastructures by drawing on the expertise of information professionals who are already involved in the acquisition, management and preservation of data in their daily jobs. Data services include planning and implementing good data management practices, thereby increasing researchers' ability to compete for grant funding and ensuring that data collections with continuing value are preserved for reuse. This volume provides a framework to guide information professionals in academic libraries, presses, and data centers through the process of managing research data from the planning stages through the life of a grant project and beyond. It illustrates principles of good practice with use-case examples and illuminates promising data service models through case studies of innovative, successful projects and collaborations.
Book Synopsis Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re-use across Societies by : OECD
Download or read book Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re-use across Societies written by OECD and published by OECD Publishing. This book was released on 2019-11-26 with total page 135 pages. Available in PDF, EPUB and Kindle. Book excerpt: This report examines the opportunities of enhancing access to and sharing of data (EASD) in the context of the growing importance of artificial intelligence and the Internet of Things. It discusses how EASD can maximise the social and economic value of data re-use and how the related risks and challenges can be addressed. It highlights the trade-offs, complementarities and possible unintended consequences of policy action – and inaction. It also provides examples of EASD approaches and policy initiatives in OECD countries and partner economies.
Book Synopsis Curating Research Data by : Lisa R. Johnston
Download or read book Curating Research Data written by Lisa R. Johnston and published by . This book was released on 2016-11-01 with total page 285 pages. Available in PDF, EPUB and Kindle. Book excerpt: Data are becoming the proverbial coin of the digital realm: a research commodity that might purchase reputation credit in a disciplinary culture of data sharing, or buy transparency when faced with funding agency mandates or publisher scrutiny. Unlike most monetary systems, however, digital data can flow in all too great an abundance. Not only does this currency actually grow on trees, but it comes from animals, books, thoughts, and each of us! And that is what makes data curation so essential. The abundance of digital research data challenges library and information science professionals to harness this flow of information streaming from research discovery and scholarly pursuit and preserve the unique evidence for future use. Volume One of Curating Research Data explores the variety of reasons, motivations, and drivers for why data curation services are needed in the context of academic and disciplinary data repository efforts. Twelve chapters, divided into three parts, take an in-depth look at the complex practice of data curation as it emerges around us. Part I sets the stage for data curation by describing current policies, data sharing cultures, and collaborative efforts currently underway that impact potential services. Part II brings several key issues, such as cost recovery and marketing strategy, into focus for practitioners when considering how to put data curation services in action. Finally, Part III describes the full lifecycle of data by examining the ethical and practical reuse issues that data curation practitioners must consider as we strive to prepare data for the future. Digital data is ubiquitous and rapidly reshaping how scholarship progresses now and into the future. The information expertise of librarians can help ensure the resiliency of digital data, and the information it represents, by addressing how the meaning, integrity, and provenance of digital data generated by researchers today will be captured and conveyed to future researchers.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :030948247X Total Pages :103 pages Book Rating :4.3/5 (94 download)
Book Synopsis Data Matters by : National Academies of Sciences, Engineering, and Medicine
Download or read book Data Matters written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2019-01-28 with total page 103 pages. Available in PDF, EPUB and Kindle. Book excerpt: In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.
Book Synopsis Handbook on Using Administrative Data for Research and Evidence-based Policy by : Shawn Cole
Download or read book Handbook on Using Administrative Data for Research and Evidence-based Policy written by Shawn Cole and published by Abdul Latif Jameel Poverty Action Lab. This book was released on 2021 with total page 618 pages. Available in PDF, EPUB and Kindle. Book excerpt: This Handbook intends to inform Data Providers and researchers on how to provide privacy-protected access to, handle, and analyze administrative data, and to link them with existing resources, such as a database of data use agreements (DUA) and templates. Available publicly, the Handbook will provide guidance on data access requirements and procedures, data privacy, data security, property rights, regulations for public data use, data architecture, data use and storage, cost structure and recovery, ethics and privacy-protection, making data accessible for research, and dissemination for restricted access use. The knowledge base will serve as a resource for all researchers looking to work with administrative data and for Data Providers looking to make such data available.
