Registries for Evaluating Patient Outcomes


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.




Handbook on Using Administrative Data for Research and Evidence-based Policy


Book Description

This Handbook intends to inform Data Providers and researchers on how to provide privacy-protected access to, handle, and analyze administrative data, and to link them with existing resources, such as a database of data use agreements (DUA) and templates. Available publicly, the Handbook will provide guidance on data access requirements and procedures, data privacy, data security, property rights, regulations for public data use, data architecture, data use and storage, cost structure and recovery, ethics and privacy-protection, making data accessible for research, and dissemination for restricted access use. The knowledge base will serve as a resource for all researchers looking to work with administrative data and for Data Providers looking to make such data available.







Cochrane Handbook for Systematic Reviews of Interventions


Book Description

Healthcare providers, consumers, researchers and policy makers are inundated with unmanageable amounts of information, including evidence from healthcare research. It has become impossible for all to have the time and resources to find, appraise and interpret this evidence and incorporate it into healthcare decisions. Cochrane Reviews respond to this challenge by identifying, appraising and synthesizing research-based evidence and presenting it in a standardized format, published in The Cochrane Library (www.thecochranelibrary.com). The Cochrane Handbook for Systematic Reviews of Interventions contains methodological guidance for the preparation and maintenance of Cochrane intervention reviews. Written in a clear and accessible format, it is the essential manual for all those preparing, maintaining and reading Cochrane reviews. Many of the principles and methods described here are appropriate for systematic reviews applied to other types of research and to systematic reviews of interventions undertaken by others. It is hoped therefore that this book will be invaluable to all those who want to understand the role of systematic reviews, critically appraise published reviews or perform reviews themselves.




National Best Practice Guidelines for Indigenous Data Linkage Activities Relating to Aboriginal and Torres Strait Islander People [electronic Resource]


Book Description

"This report consists of a thematic list of projects that used, or are using, data linkage in regard to Aboriginal and Torres Strait Islander people. The report is intended to be a resource for analysts and data linkers, who are considering project design or just researching data linkage that has been conducted according to various medical themes or conditions affecting Aboriginal and Torres Strait Islander Australians."--P. 1.




SEDCAR, Standards for Education Data Collection and Reporting


Book Description

A report of the Cooperative Education Data Collection and Reporting (CEDCAR) Standards Project Task Force under contract to the National Center for Education Statistics, U.S. Department of Education.




Advances in Business Statistics, Methods and Data Collection


Book Description

ADVANCES IN BUSINESS STATISTICS, METHODS AND DATA COLLECTION Advances in Business Statistics, Methods and Data Collection delivers insights into the latest state of play in producing establishment statistics, obtained from businesses, farms and institutions. Presenting materials and reflecting discussions from the 6th International Conference on Establishment Statistics (ICES-VI), this edited volume provides a broad overview of methodology underlying current establishment statistics from every aspect of the production life cycle while spotlighting innovative and impactful advancements in the development, conduct, and evaluation of modern establishment statistics programs. Highlights include: Practical discussions on agile, timely, and accurate measurement of rapidly evolving economic phenomena such as globalization, new computer technologies, and the informal sector. Comprehensive explorations of administrative and new data sources and technologies, covering big (organic) data sources and methods for data integration, linking, machine learning and visualization. Detailed compilations of statistical programs’ responses to wide-ranging data collection and production challenges, among others caused by the Covid-19 pandemic. In-depth examinations of business survey questionnaire design, computerization, pretesting methods, experimentation, and paradata. Methodical presentations of conventional and emerging procedures in survey statistics techniques for establishment statistics, encompassing probability sampling designs and sample coordination, non-probability sampling, missing data treatments, small area estimation and Bayesian methods. Providing a broad overview of most up-to-date science, this book challenges the status quo and prepares researchers for current and future challenges in establishment statistics and methods. Perfect for survey researchers, government statisticians, National Bank employees, economists, and undergraduate and graduate students in survey research and economics, Advances in Business Statistics, Methods and Data Collection will also earn a place in the toolkit of researchers working –with data– in industries across a variety of fields.







Race, Ethnicity, and Language Data


Book Description

The goal of eliminating disparities in health care in the United States remains elusive. Even as quality improves on specific measures, disparities often persist. Addressing these disparities must begin with the fundamental step of bringing the nature of the disparities and the groups at risk for those disparities to light by collecting health care quality information stratified by race, ethnicity and language data. Then attention can be focused on where interventions might be best applied, and on planning and evaluating those efforts to inform the development of policy and the application of resources. A lack of standardization of categories for race, ethnicity, and language data has been suggested as one obstacle to achieving more widespread collection and utilization of these data. Race, Ethnicity, and Language Data identifies current models for collecting and coding race, ethnicity, and language data; reviews challenges involved in obtaining these data, and makes recommendations for a nationally standardized approach for use in health care quality improvement.