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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.
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.
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.
The Data Book: Collection and Management of Research Data is the first practical book written for researchers and research team members covering how to collect and manage data for research. The book covers basic types of data and fundamentals of how data grow, move and change over time. Focusing on pre-publication data collection and handling, the text illustrates use of these key concepts to match data collection and management methods to a particular study, in essence, making good decisions about data. The first section of the book defines data, introduces fundamental types of data that bear on methodology to collect and manage them, and covers data management planning and research reproducibility. The second section covers basic principles of and options for data collection and processing emphasizing error resistance and traceability. The third section focuses on managing the data collection and processing stages of research such that quality is consistent and ultimately capable of supporting conclusions drawn from data. The final section of the book covers principles of data security, sharing, and archival. This book will help graduate students and researchers systematically identify and implement appropriate data collection and handling methods.
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.
Explore modern data engineering techniques and best practices to build scalable, efficient, and future-proof data processing systems across cloud platforms Key Features Architect and engineer optimized data solutions in the cloud with best practices for performance and cost-effectiveness Explore design patterns and use cases to balance roles, technology choices, and processes for a future-proof design Learn from experts to avoid common pitfalls in data engineering projects Purchase of the print or Kindle book includes a free PDF eBook Book DescriptionRevolutionize your approach to data processing in the fast-paced business landscape with this essential guide to data engineering. Discover the power of scalable, efficient, and secure data solutions through expert guidance on data engineering principles and techniques. Written by two industry experts with over 60 years of combined experience, it offers deep insights into best practices, architecture, agile processes, and cloud-based pipelines. You’ll start by defining the challenges data engineers face and understand how this agile and future-proof comprehensive data solution architecture addresses them. As you explore the extensive toolkit, mastering the capabilities of various instruments, you’ll gain the knowledge needed for independent research. Covering everything you need, right from data engineering fundamentals, the guide uses real-world examples to illustrate potential solutions. It elevates your skills to architect scalable data systems, implement agile development processes, and design cloud-based data pipelines. The book further equips you with the knowledge to harness serverless computing and microservices to build resilient data applications. By the end, you'll be armed with the expertise to design and deliver high-performance data engineering solutions that are not only robust, efficient, and secure but also future-ready.What you will learn Architect scalable data solutions within a well-architected framework Implement agile software development processes tailored to your organization's needs Design cloud-based data pipelines for analytics, machine learning, and AI-ready data products Optimize data engineering capabilities to ensure performance and long-term business value Apply best practices for data security, privacy, and compliance Harness serverless computing and microservices to build resilient, scalable, and trustworthy data pipelines Who this book is for If you are a data engineer, ETL developer, or big data engineer who wants to master the principles and techniques of data engineering, this book is for you. A basic understanding of data engineering concepts, ETL processes, and big data technologies is expected. This book is also for professionals who want to explore advanced data engineering practices, including scalable data solutions, agile software development, and cloud-based data processing pipelines.
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.