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In this book readers will find technological discussions on the existing and emerging technologies across the different stages of the big data value chain. They will learn about legal aspects of big data, the social impact, and about education needs and requirements. And they will discover the business perspective and how big data technology can be exploited to deliver value within different sectors of the economy. The book is structured in four parts: Part I “The Big Data Opportunity” explores the value potential of big data with a particular focus on the European context. It also describes the legal, business and social dimensions that need to be addressed, and briefly introduces the European Commission’s BIG project. Part II “The Big Data Value Chain” details the complete big data lifecycle from a technical point of view, ranging from data acquisition, analysis, curation and storage, to data usage and exploitation. Next, Part III “Usage and Exploitation of Big Data” illustrates the value creation possibilities of big data applications in various sectors, including industry, healthcare, finance, energy, media and public services. Finally, Part IV “A Roadmap for Big Data Research” identifies and prioritizes the cross-sectorial requirements for big data research, and outlines the most urgent and challenging technological, economic, political and societal issues for big data in Europe. This compendium summarizes more than two years of work performed by a leading group of major European research centers and industries in the context of the BIG project. It brings together research findings, forecasts and estimates related to this challenging technological context that is becoming the major axis of the new digitally transformed business environment.
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.
Twenty-first century governments must keep pace with the expectations of their citizens and deliver on the promise of the digital age. Data-driven approaches are particularly effective for meeting those expectations and rethinking the way governments and citizens interact. This report highlights the important role data can play in creating conditions that improve public services, increase the effectiveness of public spending and inform ethical and privacy considerations. It presents a data-driven public sector framework that can help countries or organisations assess the elements needed for using data to make better-informed decisions across public sectors.
An Economist Book of the Year Every minute of every day, our data is harvested and exploited… It is time to pull the plug on the surveillance economy. Governments and hundreds of corporations are spying on you, and everyone you know. They're not just selling your data. They're selling the power to influence you and decide for you. Even when you've explicitly asked them not to. Reclaiming privacy is the only way we can regain control of our lives and our societies. These governments and corporations have too much power, and their power stems from us--from our data. Privacy is as collective as it is personal, and it's time to take back control. Privacy Is Power tells you how to do exactly that. It calls for the end of the data economy and proposes concrete measures to bring that end about, offering practical solutions, both for policymakers and ordinary citizens.
This White Paper sets out clearly how the UK will continue to unlock and seize the benefits of data sharing in the future in a responsible way. Firstly by ensuring equality in access to data; secondly in building greater trust in public data; and thirdly by ensuring that public services are more personalised and efficient by being smarter with the data public bodies hold. The UK is currently co-chairing the Open Government Partnership of 55 governments whose theme is 'Transparency drives prosperity' with the belief that opening up data will empower citizens, foster innovation and reform public services. It is also, therefore, about how others participate. About businesses and organisations becoming more transparent themselves and pushing data into the public domain and individuals taking that data and using it to make better decisions or press for different types of services.
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.
The "Overview of the Privacy Act of 1974," prepared by the Department of Justice's Office of Privacy and Civil Liberties (OPCL), is a discussion of the Privacy Act's disclosure prohibition, its access and amendment provisions, and its agency recordkeeping requirements. Tracking the provisions of the Act itself, the Overview provides reference to, and legal analysis of, court decisions interpreting the Act's provisions.
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.