Improving Access to Data While Protecting Confidentiality

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Publisher :
ISBN 13 :
Total Pages : 17 pages
Book Rating : 4.:/5 (338 download)

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Book Synopsis Improving Access to Data While Protecting Confidentiality by : George T. Duncan

Download or read book Improving Access to Data While Protecting Confidentiality written by George T. Duncan and published by . This book was released on 1989 with total page 17 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Innovations in Federal Statistics

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Publisher : National Academies Press
ISBN 13 : 030945428X
Total Pages : 151 pages
Book Rating : 4.3/5 (94 download)

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Book Synopsis Innovations in Federal Statistics by : National Academies of Sciences, Engineering, and Medicine

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.

Expanding Access to Research Data

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Publisher : National Academies Press
ISBN 13 : 9780309100120
Total Pages : 142 pages
Book Rating : 4.1/5 (1 download)

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Book Synopsis Expanding Access to Research Data by : Panel on Data Access for Research Purposes

Download or read book Expanding Access to Research Data written by Panel on Data Access for Research Purposes and published by National Academies Press. This book was released on 2005-11-11 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt: Policy makers need information about the nation—ranging from trends in the overall economy down to the use by individuals of Medicare—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 access— including restricted access to confidential data and unrestricted access to appropriately altered public-use data—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.

Improving Access to and Confidentiality of Research Data

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Publisher : National Academies Press
ISBN 13 : 0309071801
Total Pages : 75 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Improving Access to and Confidentiality of Research Data by : National Research Council

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 2000-09-11 with total page 75 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.

Beyond the HIPAA Privacy Rule

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Publisher : National Academies Press
ISBN 13 : 0309124999
Total Pages : 334 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Beyond the HIPAA Privacy Rule by : Institute of Medicine

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.

Putting People on the Map

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Publisher : National Academies Press
ISBN 13 : 0309104149
Total Pages : 177 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Putting People on the Map by : National Research Council

Download or read book Putting People on the Map written by National Research Council and published by National Academies Press. This book was released on 2007-03-22 with total page 177 pages. Available in PDF, EPUB and Kindle. Book excerpt: Precise, accurate spatial information linked to social and behavioral data is revolutionizing social science by opening new questions for investigation and improving understanding of human behavior in its environmental context. At the same time, precise spatial data make it more likely that individuals can be identified, breaching the promise of confidentiality made when the data were collected. Because norms of science and government agencies favor open access to all scientific data, the tension between the benefits of open access and the risks associated with potential breach of confidentiality pose significant challenges to researchers, research sponsors, scientific institutions, and data archivists. Putting People on the Map finds that several technical approaches for making data available while limiting risk have potential, but none is adequate on its own or in combination. This book offers recommendations for education, training, research, and practice to researchers, professional societies, federal agencies, institutional review boards, and data stewards.

Protecting Data Privacy in Health Services Research

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Publisher : National Academies Press
ISBN 13 : 0309071879
Total Pages : 208 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Protecting Data Privacy in Health Services Research by : Institute of Medicine

Download or read book Protecting Data Privacy in Health Services Research written by Institute of Medicine and published by National Academies Press. This book was released on 2001-01-13 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: The need for quality improvement and for cost saving are driving both individual choices and health system dynamics. The health services research that we need to support informed choices depends on access to data, but at the same time, individual privacy and patient-health care provider confidentiality must be protected.

Expanding Access to Research Data

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Publisher : National Academies Press
ISBN 13 : 0309100127
Total Pages : 133 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Expanding Access to Research Data by : National Research Council

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.

Registries for Evaluating Patient Outcomes

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Publisher : Government Printing Office
ISBN 13 : 1587634333
Total Pages : 385 pages
Book Rating : 4.5/5 (876 download)

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Book Synopsis Registries for Evaluating Patient Outcomes by : Agency for Healthcare Research and Quality/AHRQ

Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

Expanding Access to Research Data

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Publisher : National Academies Press
ISBN 13 : 0309164958
Total Pages : 132 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Expanding Access to Research Data by : National Research Council

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.

Conducting Biosocial Surveys

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Publisher : National Academies Press
ISBN 13 : 0309157064
Total Pages : 124 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Conducting Biosocial Surveys by : National Research Council

Download or read book Conducting Biosocial Surveys written by National Research Council and published by National Academies Press. This book was released on 2010-10-02 with total page 124 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.

Guide to Protecting the Confidentiality of Personally Identifiable Information

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Author :
Publisher : DIANE Publishing
ISBN 13 : 1437934889
Total Pages : 59 pages
Book Rating : 4.4/5 (379 download)

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Book Synopsis Guide to Protecting the Confidentiality of Personally Identifiable Information by : Erika McCallister

Download or read book Guide to Protecting the Confidentiality of Personally Identifiable Information written by Erika McCallister and published by DIANE Publishing. This book was released on 2010-09 with total page 59 pages. Available in PDF, EPUB and Kindle. Book excerpt: The escalation of security breaches involving personally identifiable information (PII) has contributed to the loss of millions of records over the past few years. Breaches involving PII are hazardous to both individuals and org. Individual harms may include identity theft, embarrassment, or blackmail. Organ. harms may include a loss of public trust, legal liability, or remediation costs. To protect the confidentiality of PII, org. should use a risk-based approach. This report provides guidelines for a risk-based approach to protecting the confidentiality of PII. The recommend. here are intended primarily for U.S. Fed. gov¿t. agencies and those who conduct business on behalf of the agencies, but other org. may find portions of the publication useful.

Privacy, Big Data, and the Public Good

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Publisher : Cambridge University Press
ISBN 13 : 1316094456
Total Pages : 343 pages
Book Rating : 4.3/5 (16 download)

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Book Synopsis Privacy, Big Data, and the Public Good by : Julia Lane

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.

Federal Statistics, Multiple Data Sources, and Privacy Protection

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Publisher : National Academies Press
ISBN 13 : 0309465370
Total Pages : 195 pages
Book Rating : 4.3/5 (94 download)

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Book Synopsis Federal Statistics, Multiple Data Sources, and Privacy Protection by : National Academies of Sciences, Engineering, and Medicine

Download or read book Federal Statistics, Multiple Data Sources, and Privacy Protection written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-01-27 with total page 195 pages. Available in PDF, EPUB and Kindle. Book excerpt: The environment for obtaining information and providing statistical data for policy makers and the public has changed significantly in the past decade, raising questions about the fundamental survey paradigm that underlies federal statistics. New data sources provide opportunities to develop a new paradigm that can improve timeliness, geographic or subpopulation detail, and statistical efficiency. It also has the potential to reduce the costs of producing federal statistics. The panel's first report described federal statistical agencies' current paradigm, which relies heavily on sample surveys for producing national statistics, and challenges agencies are facing; the legal frameworks and mechanisms for protecting the privacy and confidentiality of statistical data and for providing researchers access to data, and challenges to those frameworks and mechanisms; and statistical agencies access to alternative sources of data. The panel recommended a new approach for federal statistical programs that would combine diverse data sources from government and private sector sources and the creation of a new entity that would provide the foundational elements needed for this new approach, including legal authority to access data and protect privacy. This second of the panel's two reports builds on the analysis, conclusions, and recommendations in the first one. This report assesses alternative methods for implementing a new approach that would combine diverse data sources from government and private sector sources, including describing statistical models for combining data from multiple sources; examining statistical and computer science approaches that foster privacy protections; evaluating frameworks for assessing the quality and utility of alternative data sources; and various models for implementing the recommended new entity. Together, the two reports offer ideas and recommendations to help federal statistical agencies examine and evaluate data from alternative sources and then combine them as appropriate to provide the country with more timely, actionable, and useful information for policy makers, businesses, and individuals.

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re-use across Societies

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Author :
Publisher : OECD Publishing
ISBN 13 : 9264660658
Total Pages : 138 pages
Book Rating : 4.2/5 (646 download)

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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 138 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.

Privacy in Statistical Databases

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Author :
Publisher : Springer
ISBN 13 : 3540259554
Total Pages : 376 pages
Book Rating : 4.5/5 (42 download)

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Book Synopsis Privacy in Statistical Databases by : Josep Domingo-Ferrer

Download or read book Privacy in Statistical Databases written by Josep Domingo-Ferrer and published by Springer. This book was released on 2004-06-30 with total page 376 pages. Available in PDF, EPUB and Kindle. Book excerpt: Privacy in statistical databases is about ?nding tradeo?s to the tension between the increasing societal and economical demand for accurate information and the legal and ethical obligation to protect the privacy of individuals and enterprises, which are the source of the statistical data. Statistical agencies cannot expect to collect accurate information from individual or corporate respondents unless these feel the privacy of their responses is guaranteed; also, recent surveys of Web users show that a majority of these are unwilling to provide data to a Web site unless they know that privacy protection measures are in place. “Privacy in Statistical Databases2004” (PSD2004) was the ?nal conference of the CASC project (“Computational Aspects of Statistical Con?dentiality”, IST-2000-25069). PSD2004 is in the style of the following conferences: “Stat- tical Data Protection”, held in Lisbon in 1998 and with proceedings published by the O?ce of O?cial Publications of the EC, and also the AMRADS project SDC Workshop, held in Luxemburg in 2001 and with proceedings published by Springer-Verlag, as LNCS Vol. 2316. The Program Committee accepted 29 papers out of 44 submissions from 15 di?erentcountriesonfourcontinents.Eachsubmittedpaperreceivedatleasttwo reviews. These proceedings contain the revised versions of the accepted papers. These papers cover the foundations and methods of tabular data protection, masking methods for the protection of individual data (microdata), synthetic data generation, disclosure risk analysis, and software/case studies.

Privacy, Big Data, and the Public Good

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Author :
Publisher :
ISBN 13 :
Total Pages : 322 pages
Book Rating : 4.:/5 (21 download)

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Book Synopsis Privacy, Big Data, and the Public Good by : Julia I. Lane

Download or read book Privacy, Big Data, and the Public Good written by Julia I. Lane and published by . This book was released on 2014 with total page 322 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.--Publisher information.