Secondary data play an increasingly important role in epidemiology and public health research and practice; examples of secondary data sources include national surveys such as the BRFSS and NHIS, claims data for the Medicare and Medicaid systems, and public vital statistics records. Although a wealth of secondary data is available, it is not always easy to locate and access appropriate data to address a research or policy question. This practical guide circumvents these difficulties by providing an introduction to secondary data and issues specific to its management and analysis, followed by an enumeration of major sources of secondary data in the United States. Entries for each data source include the principal focus of the data, years for which it is available, history and methodology of the data collection process, and information about how to access the data and supporting materials, including relevant details about file structure and format.

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.

Providing a comprehensive foundation for planning, executing, and monitoring public health research of all types, this book goes beyond traditional epidemiologic research designs to cover technology-based approaches emerging in the new public health landscape.

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.

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)

Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

This slim volume is one of a number of excellent guides published as part of Oxford's "Pocket Guide to Social Work Research Methods" series. Compact but comprehensive, it provides a thorough introduction to one of the fastest-growing genres of research in the social work field today: secondary data analysis. After an all-too-brief summary of what constitutes this genre and a balanced analysis of its advantages and disadvantages, Vartanian (Bryn Mawr) provides guidelines for those considering the feasibility and appropriateness of using secondary data in their work. He then offers extensive summaries of 29 of the most commonly used secondary data sets. For all of the data sets, he provides a full and complete description, including key characteristics and where and how to access them. He also provides, most valuably, citations to examples of how researchers have recently used them in their empirical work. Rather redundantly, a similar package of information appears in appendixes at the end of the book. This is an admirable contribution whose only detractions are the rather random and poorly identified screenshots and other "pictures" interspersed throughout the text. Those seriously considering using secondary data analysis in their research should find this book immensely beneficial. Summing Up: Highly recommended. Graduate students and faculty/researchers. Graduate Students; Researchers/Faculty. Reviewed by J. C. Altman.

The demand for health information continues to increase, but the ability of health professionals to provide it clearly remains variable. The aim of this book is (1) to summarize and synthesize research on the selection and presentation of data pertinent to public health, and (2) to provide practical suggestions, based on this research summary and synthesis, on how scientists and other public health practitioners can better communicate data to the public, policy makers, and the press in typical real-world situations. Because communication is complex and no one approach works for all audiences, the authors emphasize how to communicate data "better" (and in some instances, contrast this with how to communicate data "worse"), rather than attempting a cookbook approach. The book contains a wealth of case studies and other examples to illustrate major points, and actual situations whenever possible. Key principles and recommendations are summarized at the end of each chapter. This book will stimulate interest among public health practitioners, scholars, and students to more seriously consider ways they can understand and improve communication about data and other types of scientific information with the public, policy makers, and the press. Improved data communication will increase the chances that evidence-based scientific findings can play a greater role in improving the public's health.

One central and enduring image of the social science researcher is of an individual who commits a great deal of time to collecting original, primary data from a field of enquiry. This approach is often underpinned by a sincerely held belief that key research questions can only be explored by the collection of ever new, and ever greater amounts of data, or that already existing data are insufficient for researchers to test their ideas. Yet such an approach to social science research can be problematic not least because the collection of primary data can be an expensive, time-consuming, and even wasteful approach to social enquiry. Secondary analysis can serve many purposes, as well as being a valid approach in its own right. However, despite its widespread application, secondary analysis is often undervalued or perceived to be the preserve of only those interested in the re-use of large-scale survey data. Highlighting both the theory and practice of secondary analysis and the use of secondary sources, this collection considers the nature of secondary analysis as a research tool; reflects on the definitional debates surrounding terms such as secondary analysis, data re-use and restudies; illustrates how secondary analysis is used in social science research; and finally reviews the practical, methodological and ethical aspects of secondary analysis. Volume One: Using Secondary Sources and Secondary Analysis Volume Two: Quantitative Approaches to Secondary Analysis Volume Three: Qualitative Data and Research in Secondary Analysis Volume Four: Ethical, Methodological and Practical Issues in Secondary Analysis

This book trains the next generation of scientists representing different disciplines to leverage the data generated during routine patient care. It formulates a more complete lexicon of evidence-based recommendations and support shared, ethical decision making by doctors with their patients. Diagnostic and therapeutic technologies continue to evolve rapidly, and both individual practitioners and clinical teams face increasingly complex ethical decisions. Unfortunately, the current state of medical knowledge does not provide the guidance to make the majority of clinical decisions on the basis of evidence. The present research infrastructure is inefficient and frequently produces unreliable results that cannot be replicated. Even randomized controlled trials (RCTs), the traditional gold standards of the research reliability hierarchy, are not without limitations. They can be costly, labor intensive, and slow, and can return results that are seldom generalizable to every patient population. Furthermore, many pertinent but unresolved clinical and medical systems issues do not seem to have attracted the interest of the research enterprise, which has come to focus instead on cellular and molecular investigations and single-agent (e.g., a drug or device) effects. For clinicians, the end result is a bit of a “data desert” when it comes to making decisions. The new research infrastructure proposed in this book will help the medical profession to make ethically sound and well informed decisions for their patients.