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Ensuring the Quality of Data Disseminated by the Federal Government

Ensuring the Quality of Data Disseminated by the Federal Government PDF Author: National Research Council
Publisher: National Academies Press
ISBN: 0309168201
Category : Political Science
Languages : en
Pages : 184

Book Description
The National Academies Science, Technology, and Law Program convened three workshops focusing on specific aspects of OMB's "Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated by Federal Agencies." The workshops were intended to assist the agencies in developing their agency-specific implementation guidelines. This workshop report details the approaches agencies are considering using to implement the guidelines.

Ensuring the Quality of Data Disseminated by the Federal Government

Ensuring the Quality of Data Disseminated by the Federal Government PDF Author: National Research Council
Publisher: National Academies Press
ISBN: 0309168201
Category : Political Science
Languages : en
Pages : 184

Book Description
The National Academies Science, Technology, and Law Program convened three workshops focusing on specific aspects of OMB's "Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated by Federal Agencies." The workshops were intended to assist the agencies in developing their agency-specific implementation guidelines. This workshop report details the approaches agencies are considering using to implement the guidelines.

Ensuring the Quality of Data Disseminated by the Federal Government

Ensuring the Quality of Data Disseminated by the Federal Government PDF Author: National Research Council
Publisher: National Academies Press
ISBN: 0309088577
Category : Political Science
Languages : en
Pages : 184

Book Description
The National Academies Science, Technology, and Law Program convened three workshops focusing on specific aspects of OMB's "Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated by Federal Agencies." The workshops were intended to assist the agencies in developing their agency-specific implementation guidelines. This workshop report details the approaches agencies are considering using to implement the guidelines.

Data Quality

Data Quality PDF Author: United States. Government Accountability Office
Publisher:
ISBN:
Category : United States
Languages : en
Pages : 33

Book Description


Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age

Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age PDF Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309147824
Category : Computers
Languages : en
Pages : 179

Book Description
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.

A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases

A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases PDF Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309212197
Category : Medical
Languages : en
Pages : 200

Book Description
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.

Expanding Access to Research Data

Expanding Access to Research Data PDF Author: National Research Council
Publisher: National Academies Press
ISBN: 0309100127
Category : Computers
Languages : en
Pages : 133

Book Description
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.

Beyond the HIPAA Privacy Rule

Beyond the HIPAA Privacy Rule PDF Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309124999
Category : Computers
Languages : en
Pages : 334

Book Description
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.

Improving information quality in the federal government

Improving information quality in the federal government PDF Author: United States. Congress. House. Committee on Government Reform. Subcommittee on Regulatory Affairs
Publisher:
ISBN:
Category : Business & Economics
Languages : en
Pages : 112

Book Description


Sharing Clinical Trial Data

Sharing Clinical Trial Data PDF Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309316324
Category : Medical
Languages : en
Pages : 236

Book Description
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.

Registries for Evaluating Patient Outcomes

Registries for Evaluating Patient Outcomes PDF Author: Agency for Healthcare Research and Quality/AHRQ
Publisher: Government Printing Office
ISBN: 1587634333
Category : Medical
Languages : en
Pages : 396

Book Description
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.