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)
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.
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.
Development Research in Practice leads the reader through a complete empirical research project, providing links to continuously updated resources on the DIME Wiki as well as illustrative examples from the Demand for Safe Spaces study. The handbook is intended to train users of development data how to handle data effectively, efficiently, and ethically. “In the DIME Analytics Data Handbook, the DIME team has produced an extraordinary public good: a detailed, comprehensive, yet easy-to-read manual for how to manage a data-oriented research project from beginning to end. It offers everything from big-picture guidance on the determinants of high-quality empirical research, to specific practical guidance on how to implement specific workflows—and includes computer code! I think it will prove durably useful to a broad range of researchers in international development and beyond, and I learned new practices that I plan on adopting in my own research group.†? —Marshall Burke, Associate Professor, Department of Earth System Science, and Deputy Director, Center on Food Security and the Environment, Stanford University “Data are the essential ingredient in any research or evaluation project, yet there has been too little attention to standardized practices to ensure high-quality data collection, handling, documentation, and exchange. Development Research in Practice: The DIME Analytics Data Handbook seeks to fill that gap with practical guidance and tools, grounded in ethics and efficiency, for data management at every stage in a research project. This excellent resource sets a new standard for the field and is an essential reference for all empirical researchers.†? —Ruth E. Levine, PhD, CEO, IDinsight “Development Research in Practice: The DIME Analytics Data Handbook is an important resource and a must-read for all development economists, empirical social scientists, and public policy analysts. Based on decades of pioneering work at the World Bank on data collection, measurement, and analysis, the handbook provides valuable tools to allow research teams to more efficiently and transparently manage their work flows—yielding more credible analytical conclusions as a result.†? —Edward Miguel, Oxfam Professor in Environmental and Resource Economics and Faculty Director of the Center for Effective Global Action, University of California, Berkeley “The DIME Analytics Data Handbook is a must-read for any data-driven researcher looking to create credible research outcomes and policy advice. By meticulously describing detailed steps, from project planning via ethical and responsible code and data practices to the publication of research papers and associated replication packages, the DIME handbook makes the complexities of transparent and credible research easier.†? —Lars Vilhuber, Data Editor, American Economic Association, and Executive Director, Labor Dynamics Institute, Cornell University
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.
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.
Data warehouses and online analytical processing (OLAP) are emerging key technologies for enterprise decision support systems. They provide sophisticated technologies from data integration, data collection and retrieval, query optimization, and data analysis to advanced user interfaces. New research and technological achievements in the area of data warehousing are implemented in commercial database management systems, and organizations are developing data warehouse systems into their information system infrastructures. Data Warehouses and OLAP: Concepts, Architectures and Solutions covers a wide range of technical, technological, and research issues. It provides theoretical frameworks, presents challenges and their possible solutions, and examines the latest empirical research findings in the area. It is a resource of possible solutions and technologies that can be applied when designing, implementing, and deploying a data warehouse, and assists in the dissemination of knowledge in this field.
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.
This document has been adapted from the research protocol used to compile country case study data and to produce the results summarized in the 2023 report titled Illuminating Hidden Harvests: The contributions of small-scale fisheries to sustainable development (hereafter, IHH study) (FAO, Duke University & WorldFish, 2023). It has also been designed in conjunction with the e-learning course titled Collecting secondary data on small-scale fisheries, and aims to support practitioners and researchers around the world in compiling national and subnational data and assess the contributions and impacts of small-scale fisheries of interest to sustainable development. These contributions of small-scale fisheries are categorized according to the environmental, economic and social (including gender equality and nutrition and food security) dimensions of sustainable development, as well as the governance of small-scale fisheries. The approach to compile IHH data was developed in a way that: (i) is adaptable to each country’s context and data availability; and (ii) is comprehensive yet straightforward and cost-effective. While originally designed to be conducted at the national level, this approach can and should be modified as desired to fit different scales of study, and to respond to the particular needs and priorities of individual researchers’ regions of interest. As the name implies, the approach was designed to compile existing data on small-scale fisheries, and not to collect it. Rather, this approach only reinforces the importance of collecting more detailed data specific to small-scale fisheries (for example, as distinct from large-scale fisheries, aquaculture and recreational fisheries), in order to help fill the knowledge gap on small-scale fisheries’ contributions to sustainable development. Given the vast diversity of small-scale fisheries in different countries, a standard definition of “small-scale fisheries” is not prescribed here, nor in the IHH study; researchers should refer to the definitions used in each country context. However, to better characterize fisheries and the differences among them that often contribute to local definitions of small or large-scale fisheries, the IHH study and this approach used a fisheries activity characterization matrix. This tool provides a characterization of the small-scale fisheries subsector at the country level and allows researchers to assess the “scale” of small-scale fishing activities in a more relational manner, thus avoiding the imposition of fixed definitions.
