Download or read book Expanding Access to Research Data written by National Research Council and published by National Academies Press. This book was released on 2005-12-11 with total page 133 pages. Available in PDF, EPUB and Kindle. Book excerpt: Policy makers need information about the nationâ€"ranging from trends in the overall economy down to the use by individuals of Medicareâ€"in order to evaluate existing programs and to develop new ones. This information often comes from research based on data about individual people, households, and businesses and other organizations, collected by statistical agencies. The benefit of increasing data accessibility to researchers and analysts is better informed public policy. To realize this benefit, a variety of modes for data accessâ€" including restricted access to confidential data and unrestricted access to appropriately altered public-use dataâ€"must be used. The risk of expanded access to potentially sensitive data is the increased probability of breaching the confidentiality of the data and, in turn, eroding public confidence in the data collection enterprise. Indeed, the statistical system of the United States ultimately depends on the willingness of the public to provide the information on which research data are based. Expanding Access to Research Data issues guidance on how to more fully exploit these tradeoffs. The panel's recommendations focus on needs highlighted by legal, social, and technological changes that have occurred during the last decade.
Download or read book Expanding Access to Research Data written by National Research Council and published by National Academies Press. This book was released on 2005-11-11 with total page 132 pages. Available in PDF, EPUB and Kindle. Book excerpt: Policy makers need information about the nationâ€"ranging from trends in the overall economy down to the use by individuals of Medicareâ€"in order to evaluate existing programs and to develop new ones. This information often comes from research based on data about individual people, households, and businesses and other organizations, collected by statistical agencies. The benefit of increasing data accessibility to researchers and analysts is better informed public policy. To realize this benefit, a variety of modes for data accessâ€" including restricted access to confidential data and unrestricted access to appropriately altered public-use dataâ€"must be used. The risk of expanded access to potentially sensitive data is the increased probability of breaching the confidentiality of the data and, in turn, eroding public confidence in the data collection enterprise. Indeed, the statistical system of the United States ultimately depends on the willingness of the public to provide the information on which research data are based. Expanding Access to Research Data issues guidance on how to more fully exploit these tradeoffs. The panel's recommendations focus on needs highlighted by legal, social, and technological changes that have occurred during the last decade.
Download or read book Improving Access to and Confidentiality of Research Data written by National Research Council and published by National Academies Press. This book was released on 2000-08-11 with total page 74 pages. Available in PDF, EPUB and Kindle. Book excerpt: Improving Access to and Confidentiality of Research Data summarizes a workshop convened by the Committee on National Statistics (CNSTAT) to promote discussion about methods for advancing the often conflicting goals of exploiting the research potential of microdata and maintaining acceptable levels of confidentiality. This report outlines essential themes of the access versus confidentiality debate that emerged during the workshop. Among these themes are the tradeoffs and tensions between the needs of researchers and other data users on the one hand and confidentiality requirements on the other; the relative advantages and costs of data perturbation techniques (applied to facilitate public release) versus restricted access as tools for improving security; and the need to quantify disclosure risksâ€"both absolute and relativeâ€"created by researchers and research data, as well as by other data users and other types of data.
Download or read book Ensuring the Integrity Accessibility and Stewardship of Research Data in the Digital Age written by Institute of Medicine and published by National Academies Press. This book was released on 2009-11-17 with total page 179 pages. Available in PDF, EPUB and Kindle. Book excerpt: As digital technologies are expanding the power and reach of research, they are also raising complex issues. These include complications in ensuring the validity of research data; standards that do not keep pace with the high rate of innovation; restrictions on data sharing that reduce the ability of researchers to verify results and build on previous research; and huge increases in the amount of data being generated, creating severe challenges in preserving that data for long-term use. Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age examines the consequences of the changes affecting research data with respect to three issues - integrity, accessibility, and stewardship-and finds a need for a new approach to the design and the management of research projects. The report recommends that all researchers receive appropriate training in the management of research data, and calls on researchers to make all research data, methods, and other information underlying results publicly accessible in a timely manner. The book also sees the stewardship of research data as a critical long-term task for the research enterprise and its stakeholders. Individual researchers, research institutions, research sponsors, professional societies, and journals involved in scientific, engineering, and medical research will find this book an essential guide to the principles affecting research data in the digital age.
Download or read book Innovations in Federal Statistics written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-04-21 with total page 151 pages. Available in PDF, EPUB and Kindle. Book excerpt: Federal government statistics provide critical information to the country and serve a key role in a democracy. For decades, sample surveys with instruments carefully designed for particular data needs have been one of the primary methods for collecting data for federal statistics. However, the costs of conducting such surveys have been increasing while response rates have been declining, and many surveys are not able to fulfill growing demands for more timely information and for more detailed information at state and local levels. Innovations in Federal Statistics examines the opportunities and risks of using government administrative and private sector data sources to foster a paradigm shift in federal statistical programs that would combine diverse data sources in a secure manner to enhance federal statistics. This first publication of a two-part series discusses the challenges faced by the federal statistical system and the foundational elements needed for a new paradigm.
Download or read book Managing Scientific Information and Research Data written by Svetla Baykoucheva and published by Chandos Publishing. This book was released on 2015-07-14 with total page 162 pages. Available in PDF, EPUB and Kindle. Book excerpt: Innovative technologies are changing the way research is performed, preserved, and communicated. Managing Scientific Information and Research Data explores how these technologies are used and provides detailed analysis of the approaches and tools developed to manage scientific information and data. Following an introduction, the book is then divided into 15 chapters discussing the changes in scientific communication; new models of publishing and peer review; ethics in scientific communication; preservation of data; discovery tools; discipline-specific practices of researchers for gathering and using scientific information; academic social networks; bibliographic management tools; information literacy and the information needs of students and researchers; the involvement of academic libraries in eScience and the new opportunities it presents to librarians; and interviews with experts in scientific information and publishing. Promotes innovative technologies for creating, sharing and managing scientific content Presents new models of scientific publishing, peer review, and dissemination of information Serves as a practical guide for researchers, students, and librarians on how to discover, filter, and manage scientific information Advocates for the adoption of unique author identifiers such as ORCID and ResearcherID Looks into new tools that make scientific information easy to discover and manage Shows what eScience is and why it is becoming a priority for academic libraries Demonstrates how Electronic Laboratory Notebooks can be used to record, store, share, and manage research data Shows how social media and the new area of Altmetrics increase researchers’ visibility and measure attention to their research Directs to sources for datasets Provides directions on choosing and using bibliographic management tools Critically examines the metrics used to evaluate research impact Aids strategic thinking and informs decision making
Download or read book Public Access to Federally funded Research written by United States. Congress. House. Committee on Oversight and Government Reform. Subcommittee on Information Policy, Census, and National Archives and published by . This book was released on 2011 with total page 168 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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.
Download or read book Beyond the HIPAA Privacy Rule written by Institute of Medicine and published by National Academies Press. This book was released on 2009-03-24 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.
Download or read book Consumer Data Research written by Paul Longley and published by UCL Press. This book was released on 2018-04-30 with total page 198 pages. Available in PDF, EPUB and Kindle. Book excerpt: Big Data collected by customer-facing organisations – such as smartphone logs, store loyalty card transactions, smart travel tickets, social media posts, or smart energy meter readings – account for most of the data collected about citizens today. As a result, they are transforming the practice of social science. Consumer Big Data are distinct from conventional social science data not only in their volume, variety and velocity, but also in terms of their provenance and fitness for ever more research purposes. The contributors to this book, all from the Consumer Data Research Centre, provide a first consolidated statement of the enormous potential of consumer data research in the academic, commercial and government sectors – and a timely appraisal of the ways in which consumer data challenge scientific orthodoxies. Praise for Consumer Data Research 'An insightful, state-of-the-art guide into the social and commercial value of applying geographical thinking to the study of consumer data.' Professor Richard Harris, University of Bristol 'An excellent guide to leveraging the value of academic research on valid data. Partnerships based around consumer data should be encouraged and supported by all and their outputs used to better the way we manage the world we live in.' Bill Grimsey, retailer and author of The Vanishing Highstreet 'The use of data from everyday consumer transactions is a potential game-changer for understanding economic and social patterns and trends. This is an excellent overview of the field.' Dr.Tom Smith, Managing Director, Office for National Statistics Data Science Campus
Download or read book Policy Guidelines for the Development and Promotion of Open Access written by Swan, Alma and published by UNESCO Publishing. This book was released on 2012-04-10 with total page 79 pages. Available in PDF, EPUB and Kindle. Book excerpt: UNESCO issued this publication to demystify the concept of open access (OA) and to provide concrete steps on putting relevant policies in place. Its focus is on scientific research from peer-reviewed journal articles. Building capacities in Member States for Open Access is a necessary but not sufficient condition for promotion of the concept. Creating an enabling policy environment for OA is therefore a priority. This publication will serve the needs of OA policy development at the government, institutional and funding agency level. The overall objective of the Policy Guidelines is to promote Open Access in Member States by facilitating understanding of all relevant issues related to Open Access. The guidelines are not prescriptive in nature, but are suggestive to facilitate knowledge-based decision-making to adopt OA policies and strengthen national research systems.
Download or read book Fostering Integrity in Research written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-01-13 with total page 327 pages. Available in PDF, EPUB and Kindle. Book excerpt: The integrity of knowledge that emerges from research is based on individual and collective adherence to core values of objectivity, honesty, openness, fairness, accountability, and stewardship. Integrity in science means that the organizations in which research is conducted encourage those involved to exemplify these values in every step of the research process. Understanding the dynamics that support â€" or distort â€" practices that uphold the integrity of research by all participants ensures that the research enterprise advances knowledge. The 1992 report Responsible Science: Ensuring the Integrity of the Research Process evaluated issues related to scientific responsibility and the conduct of research. It provided a valuable service in describing and analyzing a very complicated set of issues, and has served as a crucial basis for thinking about research integrity for more than two decades. However, as experience has accumulated with various forms of research misconduct, detrimental research practices, and other forms of misconduct, as subsequent empirical research has revealed more about the nature of scientific misconduct, and because technological and social changes have altered the environment in which science is conducted, it is clear that the framework established more than two decades ago needs to be updated. Responsible Science served as a valuable benchmark to set the context for this most recent analysis and to help guide the committee's thought process. Fostering Integrity in Research identifies best practices in research and recommends practical options for discouraging and addressing research misconduct and detrimental research practices.
Download or read book Seeking Impact and Visibility written by Trotter, Henry and published by African Minds. This book was released on 2014-06-12 with total page 262 pages. Available in PDF, EPUB and Kindle. Book excerpt: African scholarly research is relatively invisible globally because even though research production on the continent is growing in absolute terms, it is falling in comparative terms. In addition, traditional metrics of visibility, such as the Impact Factor, fail to make legible all African scholarly production. Many African universities also do not take a strategic approach to scholarly communication to broaden the reach of their scholars' work. To address this challenge, the Scholarly Communication in Africa Programme (SCAP) was established to help raise the visibility of African scholarship by mapping current research and communication practices in Southern African universities and by recommending and piloting technical and administrative innovations based on open access dissemination principles. To do this, SCAP conducted extensive research in four faculties at the Universities of Botswana, Cape Town, Mauritius and Namibia.
Download or read book Privacy Big Data and the Public Good written by Julia Lane and published by Cambridge University Press. This book was released on 2014-06-09 with total page 343 pages. Available in PDF, EPUB and Kindle. Book excerpt: Massive amounts of data on human beings can now be analyzed. Pragmatic purposes abound, including selling goods and services, winning political campaigns, and identifying possible terrorists. Yet 'big data' can also be harnessed to serve the public good: scientists can use big data to do research that improves the lives of human beings, improves government services, and reduces taxpayer costs. In order to achieve this goal, researchers must have access to this data - raising important privacy questions. What are the ethical and legal requirements? What are the rules of engagement? What are the best ways to provide access while also protecting confidentiality? Are there reasonable mechanisms to compensate citizens for privacy loss? The goal of this book is to answer some of these questions. The book's authors paint an intellectual landscape that includes legal, economic, and statistical frameworks. The authors also identify new practical approaches that simultaneously maximize the utility of data access while minimizing information risk.
Download or read book Planning for Long Term Use of Biomedical Data written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2020-07-09 with total page 93 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biomedical research data sets are becoming larger and more complex, and computing capabilities are expanding to enable transformative scientific results. The National Institutes of Health's (NIH's) National Library of Medicine (NLM) has the unique role of ensuring that biomedical research data are findable, accessible, interoperable, and reusable in an ethical manner. Tools that forecast the costs of long-term data preservation could be useful as the cost to curate and manage these data in meaningful ways continues to increase, as could stewardship to assess and maintain data that have future value. The National Academies of Sciences, Engineering, and Medicine convened a workshop on July 11-12, 2019 to gather insight and information in order to develop and demonstrate a framework for forecasting long-term costs for preserving, archiving, and accessing biomedical data. Presenters and attendees discussed tools and practices that NLM could use to help researchers and funders better integrate risk management practices and considerations into data preservation, archiving, and accessing decisions; methods to encourage NIH-funded researchers to consider, update, and track lifetime data; and burdens on the academic researchers and industry staff to implement these tools, methods, and practices. This publication summarizes the presentations and discussion of the workshop.
Download or read book Conducting Biosocial Surveys written by National Research Council and published by National Academies Press. This book was released on 2010-09-02 with total page 125 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.
Download or read book Issues in Open Research Data written by Samuel A. Moore and published by Ubiquity Press. This book was released on 2014-12-19 with total page 172 pages. Available in PDF, EPUB and Kindle. Book excerpt: n 2010 the Panton Principles for Open Data in Science were published. These principles were founded upon the idea that Science is based on building on, reusing and openly criticising the published body of scientific knowledge’ (http://pantonprinciples.org) and they provide a succinct list of the fundamentals to observe when making your data open. Intended for a broad audience of academics, publishers and librarians, Issues in Research Data explores the implications of the Panton Principles through a number of perspectives on open research data in the sciences and beyond. The book features chapters by open data experts in a range of academic disciplines, covering practical information on licensing, ethics, and advice for data curators, alongside more theoretical issues surrounding the adoption of open data. As the book is open access, each chapter can stand alone from the main volume so that communities can host, distribute, build upon and remix the content that is relevant to them. Readers can access the online version via the QR code or DOI link at the front of the book.
