State Data System


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Innovations in Federal Statistics


Book Description

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.




A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases


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.




Highway Statistics


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State Data Book


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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.




Leveraging the Power of State Longitudinal Data Systems


Book Description

Faced with the need to create a competitive workforce and improve the quality of our education system, states are pursuing policy agendas to better prepare students for postsecondary education and careers. To inform these agendas, statewide longitudinal data systems (SLDSs) have become an invaluable asset and serve as a tool to help states answer pressing policy questions and improve practice. In the long term, these robust data systems can enable state education agencies to create tools such as early warning systems and data dashboards, which equip educators with information to address issues including dropouts, teacher quality and college readiness. All stakeholders will benefit in a variety of ways. However, fully harnessing the power of these robust SLDSs to answer key policy questions and provide information critical to various stakeholders depends upon state education agencies' being able to: (1) Collect the data in a way that provides valid answers to a state's critical policy questions, even as these questions change over time; (2) Define accurate measures of progress; (3) Conduct appropriate analyses of the data; (4) Present and disseminate findings to stakeholders; and (5) Use the information to drive policy and practice decisions. While IT staff and resources will always be required to maintain and update the SLDSs, the power of these systems will not be evident until education analysts and researchers also engage in the full scope of system design, maintenance and use over time. [This paper was written with Ellen B. Mandinach and Nancy J. Smith.].