Registries for Evaluating Patient Outcomes
Registries for Evaluating Patient Outcomes

Author: Agency for Healthcare Research and Quality/AHRQ

Publisher: Government Printing Office

Published: 2014-04-01

Total Pages: 385

ISBN-13: 1587634333

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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.

Innovations in Federal Statistics
Innovations in Federal Statistics

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2017-04-21

Total Pages: 151

ISBN-13: 030945428X

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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.

The State of Open Data
The State of Open Data

Author: Davies, Tim

Publisher: African Minds

Published: 2019-05-22

Total Pages: 592

ISBN-13: 1928331955

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It’s been ten years since open data first broke onto the global stage. Over the past decade, thousands of programmes and projects around the world have worked to open data and use it to address a myriad of social and economic challenges. Meanwhile, issues related to data rights and privacy have moved to the centre of public and political discourse. As the open data movement enters a new phase in its evolution, shifting to target real-world problems and embed open data thinking into other existing or emerging communities of practice, big questions still remain. How will open data initiatives respond to new concerns about privacy, inclusion, and artificial intelligence? And what can we learn from the last decade in order to deliver impact where it is most needed? The State of Open Data brings together over 60 authors from around the world to address these questions and to take stock of the real progress made to date across sectors and around the world, uncovering the issues that will shape the future of open data in the years to come.

Federal Statistics, Multiple Data Sources, and Privacy Protection
Federal Statistics, Multiple Data Sources, and Privacy Protection

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2018-01-27

Total Pages: 195

ISBN-13: 0309465370

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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.

Developing a Protocol for Observational Comparative Effectiveness Research: A User's Guide
Developing a Protocol for Observational Comparative Effectiveness Research: A User's Guide

Author: Agency for Health Care Research and Quality (U.S.)

Publisher: Government Printing Office

Published: 2013-02-21

Total Pages: 236

ISBN-13: 1587634236

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This User’s Guide is a resource for investigators and stakeholders who develop and review observational comparative effectiveness research protocols. It explains how to (1) identify key considerations and best practices for research design; (2) build a protocol based on these standards and best practices; and (3) judge the adequacy and completeness of a protocol. Eleven chapters cover all aspects of research design, including: developing study objectives, defining and refining study questions, addressing the heterogeneity of treatment effect, characterizing exposure, selecting a comparator, defining and measuring outcomes, and identifying optimal data sources. Checklists of guidance and key considerations for protocols are provided at the end of each chapter. 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. More more information, please consult the Agency website: www.effectivehealthcare.ahrq.gov)

The Reference Guide to Data Sources
The Reference Guide to Data Sources

Author: Julia Bauder

Publisher: American Library Association

Published: 2014-06-12

Total Pages: 183

ISBN-13: 0838912273

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This concise sourcebook takes the guesswork out of locating the best sources of data, a process more important than ever as the data landscape grows increasingly cluttered. Much of the most frequently used data can be found free online, and this book shows readers how to look for it with the assistance of user-friendly tools. This thoroughly annotated guide will be a boon to library staff at public libraries, high school libraries, academic libraries, and other research institutions, with concentrated coverage of Data sources for frequently researched subjects such as agriculture, the earth sciences, economics, energy, political science, transportation, and many more The basics of data reference along with an overview of the most useful sources, focusing on free online sources of reliable statistics like government agencies and NGOs Statistical datasets, and how to understand and make use of them How to use article databases, WorldCat, and subject experts to find data Methods for citing data Survey Documentation and Analysis (SDA) software This guide cuts through the data jargon to help librarians and researchers find exactly what they're looking for.

Statistical Abstract of the United States, 2012
Statistical Abstract of the United States, 2012

Author: Census Bureau

Publisher: www.Militarybookshop.CompanyUK

Published: 2011-09

Total Pages: 1024

ISBN-13: 9781780394237

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The Statistical Abstract of the United States, published since 1878, is the standard summary of statistics on the social, political, and economic organization of the United States. It is designed to serve as a convenient volume for statistical reference and as a guide to other statistical publications and sources. The latter function is served by the introductory text to each section, the source note appearing below each table, and Appendix I, which comprises the Guide to Sources of Statistics, the Guide to State Statistical Abstracts, and the Guide to Foreign Statistical Abstracts.

A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases
A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2011-08-26

Total Pages: 200

ISBN-13: 0309212197

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Chronic diseases are common and costly, yet they are also among the most preventable health problems. Comprehensive and accurate disease surveillance systems are needed to implement successful efforts which will reduce the burden of chronic diseases on the U.S. population. A number of sources of surveillance data-including population surveys, cohort studies, disease registries, administrative health data, and vital statistics-contribute critical information about chronic disease. But no central surveillance system provides the information needed to analyze how chronic disease impacts the U.S. population, to identify public health priorities, or to track the progress of preventive efforts. A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases outlines a conceptual framework for building a national chronic disease surveillance system focused primarily on cardiovascular and chronic lung diseases. This system should be capable of providing data on disparities in incidence and prevalence of the diseases by race, ethnicity, socioeconomic status, and geographic region, along with data on disease risk factors, clinical care delivery, and functional health outcomes. This coordinated surveillance system is needed to integrate and expand existing information across the multiple levels of decision making in order to generate actionable, timely knowledge for a range of stakeholders at the local, state or regional, and national levels. The recommendations presented in A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases focus on data collection, resource allocation, monitoring activities, and implementation. The report also recommends that systems evolve along with new knowledge about emerging risk factors, advancing technologies, and new understanding of the basis for disease. This report will inform decision-making among federal health agencies, especially the Department of Health and Human Services; public health and clinical practitioners; non-governmental organizations; and policy makers, among others.

Toward a National Health Care Survey
Toward a National Health Care Survey

Author: National Research Council

Publisher: National Academies Press

Published: 1992-02-01

Total Pages: 203

ISBN-13: 0309046920

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The nation's health care system has changed dramatically and the country is debating further significant changes. Comprehensive information is needed to guide policymakers in understanding and evaluating the current problems and in formulating federal health care policy. This book contains an evaluation of the plan developed by the National Center for Health Statistics for restructuring its existing provider surveys. It identifies current and future data needed by researchers and policymakers to assess the effect of changes in financing, organization, and delivery of health care on access, quality, costs, and outcomes of care and determines the extent to which the design and content of the proposed survey can meet these data needs. The book goes beyond a simple review and recommends a design framework to develop a coordinated and integrated data system to gather information about people and their illness over time and to link this information to costs and health care outcomes.