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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.
There is a fundamental tension at the heart of every statistical agency mission. Each is charged with collecting high quality data to inform the national policy and enable statistical research. This necessitates dissemination of both summary and micro data. Each is also charged with protecting the confidentiality of survey respondents. This often necessitates the blurring of the data to reduce the probability of the re-identification of individuals. The tradeoff dilemma, which could well be stated as protecting confidentiality (avoiding disclosure) but optimizing access, has become more complex as both technological advances and public perceptions have altered in an information age. Fortunately, statistical disclosure techniques have kept pace with these changes. This volume is intended to provide a review of new state of the art techniques that directly address these issues from both a theoretical and practical perspective. It provides a review of new research in the area of confidentiality and statistical disclosure techniques. A major section of the book provides an overview of new advances in the field of both economic and demographic data in measuring disclosure risk and information loss. It also presents new information on the different approaches taken by statistical agencies in disseminating data - ranging from licensing agreements , to secure access and provides a new survey of what statistical disclosure techniques are used by statistical agencies around the world. This is complimented by a series of chapters on public perceptions of statistical agency actions, including the results of a new survey on business perceptions. The book concludes with a chapter on the challenges of technology to data protection. National Statistical Agencies, statistical practitioners, thinktanks, research organisations and universities will find this a useful tool.
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.
In the past few years the United States has experienced a series of disasters, such as Hurricane Katrina in 2005, which have severely taxed and in many cases overwhelmed responding agencies. In all aspects of emergency management, geospatial data and tools have the potential to help save lives, limit damage, and reduce the costs of dealing with emergencies. Great strides have been made in the past four decades in the development of geospatial data and tools that describe locations of objects on the Earth's surface and make it possible for anyone with access to the Internet to witness the magnitude of a disaster. However, the effectiveness of any technology is as much about the human systems in which it is embedded as about the technology itself. Successful Response Starts with a Map assesses the status of the use of geospatial data, tools, and infrastructure in disaster management, and recommends ways to increase and improve their use. This book explores emergency planning and response; how geospatial data and tools are currently being used in this field; the current policies that govern their use; various issues related to data accessibility and security; training; and funding. Successful Response Starts with a Map recommends significant investments be made in training of personnel, coordination among agencies, sharing of data and tools, planning and preparedness, and the tools themselves.
The Model Rules of Professional Conduct provides an up-to-date resource for information on legal ethics. Federal, state and local courts in all jurisdictions look to the Rules for guidance in solving lawyer malpractice cases, disciplinary actions, disqualification issues, sanctions questions and much more. In this volume, black-letter Rules of Professional Conduct are followed by numbered Comments that explain each Rule's purpose and provide suggestions for its practical application. The Rules will help you identify proper conduct in a variety of given situations, review those instances where discretionary action is possible, and define the nature of the relationship between you and your clients, colleagues and the courts.
The variety and pervasiveness of confidentiality issues today is breathtaking. Not a day passes without a media report on a breach of confidentiality, a claim of attorney-client privilege, a journalist jailed for refusing to reveal a source, a medical or hospital record improperly disclosed, or a major business deal exposed by anonymous sources. In Confidence examines confidential issues that arise in various disciplines and relationships and considers which should be protected and which should not. Ronald Goldfarb organizes the book around professionals for whom confidentiality is an issue of weighty importance: government officials, attorneys, medical personnel, psychotherapists, clergy, business people, and journalists. In a chapter devoted to each, and in another on spousal privilege, he lays out specific issues and the laws positions on them. He discusses an array of court cases in which confidentiality issues played an important role and decisions were often surprising and controversial. Goldfarb also looks into the criteria that should be used when determining whether secrets must be revealed. His nuanced analysis reveals how federal government practices and technological capabilities increasingly challenge the boundaries of privacy, and his thoughtful insights open the door to meaningful new debate.
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.
Knowledge is power, and the way knowledge is shared in a congregation can build up or break down community. When congregational leaders are sensitive to the ways that information should be shared, the congregation can become safe and strong. Unfortunately, congregations can easily fall into patterns of communication that lead to disastrous interpersonal and organizational outcomes. Even in times of crisis, however, congregations can learn and practice new skills and healthy communication management. Congregational consultants Kibbie Ruth and Karen McClintock show clergy and laity how to appropriately handle information. From proper ways to respond to rumors to relating information about a staff firing to the congregation, Healthy Disclosure is filled with step-by-step ideas for handling different types of sensitive material. It helps clergy and other congregational leaders understand levels of disclosure, including how and when to reveal information, the difference between privacy and secrecy, legal issues related to public knowledge, and the power of secrets from a congregation's past. What we don't know can hurt us. The more conscious congregational leaders are of the information they have and how they pass it along to others, the better off the congregation will be. Information management is both a technical process and a spiritual undertaking. Leaders need the ability to spiritually discern, not just intellectually decide, the solutions to congregational dilemmas. Ruth and McClintock guide readers in developing the skills needed to create a congregational environment of healthy disclosure.
Written by an experienced M&A practitioner, M&A and Private Equity Confidentiality Agreements Line by Line brings to market the definitive and most comprehensive coverage to date of the confidentiality agreement process in the M&A and private equity settings, making it a critical resource for practitioners in the legal, business, and financial professions. Offering in-depth explanations of each clause as well as practical advice on negotiations, this book covers every key topic in a confidentiality agreement, including limitations on sharing of information, standstill provisions, and non-solicit clauses among many others. This book also provides readers with sample language for each clause and a discussion of each sides likely reaction and counter-reaction, drawn from real-world negotiations.
This revised and updated edition explores the law relating to patient confidentiality and reflects the recent legislation in the field. The text is written in a jargon free, non-legalistic way to allow the reader to understand the principles and how they apply to practice. The book is aimed at all health professionals who care for the patient, and for patient service managers, patient groups, relatives and anybody who is interested in understanding the law relating to patient confidentiality. The book includes case studies throughout.