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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.
As public accountability has increased and resources have become scarcer, public health, like clinical medicine, has been forced to re-examine the benefits and costs of its activities. Decision and economic analysis are basic tools in carrying out that mission. These methods have become standard practice in clinical medicine and health services research. This book , now in its second edition, was written in an effort to apply and adapt that experience with public health situations. The book was originally written to introduce Centers for Disease Control and Prevention staff to the concepts of decision and economic analysis, to provide guidance on methods to maximize comparability of studios, and to provide access to frequently used reference information. It has been adapted to meet the needs of scientists and managers in state and local health departments and managed care organizations as well as students in schools of public health and clinicians for an introductory text --a text that shows how these methods can be applied in population-based practice, to facilitate better comparability of studies, and to solidify understanding of the scientific basis for use of these tools in decision making. Decision makers will learn how these studies are conducted so they can be critical consumers-- understanding the strengths and limitations- and apply findings to policy and practice. The second edition updates and expands upon the standard methodology for condcuting prevention effectiveness analyses. Each chapter has been revised or re-written. The chapters on measuring effectiveness, decision analysis, and making information useful for decision makers as well as several appendices are entirely new.
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.
The Vaccine Safety Datalink (VSD) is a large, linked database of patient information that was developed jointly by CDC and several private managed care organizations in 1991. It includes data on vaccination histories, health outcomes, and characteristics of more than 7 million patients of eight participating health organizations. Researchers from CDC and the managed care groups have used VSD information to study whether health problems are associated with vaccinations. The subsequent VSD data sharing program was launched in 2002 to allow independent, external researchers access to information in the database. In this report, the committee that was asked to review aspects of this program recommends that two new oversight groups are needed to ensure that the policies and procedures of the VSD and its data sharing program are implemented as fairly and openly as possible.
The National Assessment of Educational Progress (NAEP), known as the nation's report card, has chronicled students' academic achievement in America for over a quarter of a century. It has been a valued source of information about students' performance, providing the best available trend data on the academic achievement of elementary, middle, and secondary school students in key subject areas. NAEP's prominence and the important need for stable and accurate measures of academic achievement call for evaluation of the program and an analysis of the extent to which its results are reasonable, valid, and informative to the public. This volume of papers considers the use and application of NAEP. It provides technical background to the recently published book, Grading the Nation's Report Card: Evaluating NAEP and Transforming the Assessment of Educational Progress (NRC, 1999), with papers on four key topics: NAEP's assessment development, content validity, design and use, and more broadly, the design of education indicator systems.