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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 issue of Child and Adolescent Psychiatric Clinics, guest edited by Drs Jessica Jeffrey, Eugene Grudnikoff, Barry Sarvet and Rajeev Krishna, will cover key topics of importance surrounding Measurement-Based Care in Child and Adolescent Psychiatry. This issue is one of four selected each year by our series Consulting Editor, Dr. Todd Peters. Topics discussed in this issue include but are not limited to: Evidence for the use of MBC in clinical practice; Validated Measures in Child Psychiatry and How to Use Them; Integrating MBC into Trainee Education; MBC In the Treatment of Depression; MBC in the Treatment of Anxiety; MBC in the Treatment of ADHD and disruptive behavior disorders; MBC in the Treatment of Substance Use Disorders; Implementing MBC in Various Practice Settings; Use of MBC Data to track Clinic Performance and Quality Outcomes; Use of MBC Data in Population Health Management; HIT resources to support MBC, among others.
Thousands of measures are in use today to assess health and health care in the United States. Although many of these measures provide useful information, their usefulness in either gauging or guiding performance improvement in health and health care is seriously limited by their sheer number, as well as their lack of consistency, compatibility, reliability, focus, and organization. To achieve better health at lower cost, all stakeholders - including health professionals, payers, policy makers, and members of the public - must be alert to what matters most. What are the core measures that will yield the clearest understanding and focus on better health and well-being for Americans? Vital Signs explores the most important issues - healthier people, better quality care, affordable care, and engaged individuals and communities - and specifies a streamlined set of 15 core measures. These measures, if standardized and applied at national, state, local, and institutional levels across the country, will transform the effectiveness, efficiency, and burden of health measurement and help accelerate focus and progress on our highest health priorities. Vital Signs also describes the leadership and activities necessary to refine, apply, maintain, and revise the measures over time, as well as how they can improve the focus and utility of measures outside the core set. If health care is to become more effective and more efficient, sharper attention is required on the elements most important to health and health care. Vital Signs lays the groundwork for the adoption of core measures that, if systematically applied, will yield better health at a lower cost for all Americans.
Clinical research presents health care providers with information on the natural history and clinical presentations of disease as well as diagnostic and treatment options. In today's healthcare system, patients, physicians, clinicians and family caregivers often lack the sufficient scientific data and evidence they need to determine the best course of treatment for the patients' medical conditions. Initial National Priorities for Comparative Effectiveness Research(CER) is designed to fill this knowledge gap by assisting patients and healthcare providers across diverse settings in making more informed decisions. In this 2009 report, the Institute of Medicine's Committee on Comparative Effectiveness Research Prioritization establishes a working definition of CER, develops a priority list of research topics, and identifies the necessary requirements to support a robust and sustainable CER enterprise. As part of the 2009 American Recovery and Reinvestment Act, Congress appropriated $1.1 billion in federal support of CER, reflecting legislators' belief that better decisions about the use of health care could improve the public's health and reduce the cost of care. The Committee on Comparative Effectiveness Research Prioritization was successful in preparing a list 100 top priority CER topics and 10 recommendations for best practices in the field.
Mental health and substance use disorders affect approximately 20 percent of Americans and are associated with significant morbidity and mortality. Although a wide range of evidence-based psychosocial interventions are currently in use, most consumers of mental health care find it difficult to know whether they are receiving high-quality care. Although the current evidence base for the effects of psychosocial interventions is sizable, subsequent steps in the process of bringing a psychosocial intervention into routine clinical care are less well defined. Psychosocial Interventions for Mental and Substance Use Disorders details the reasons for the gap between what is known to be effective and current practice and offers recommendations for how best to address this gap by applying a framework that can be used to establish standards for psychosocial interventions. The framework described in Psychosocial Interventions for Mental and Substance Use Disorders can be used to chart a path toward the ultimate goal of improving the outcomes. The framework highlights the need to (1) support research to strengthen the evidence base on the efficacy and effectiveness of psychosocial interventions; (2) based on this evidence, identify the key elements that drive an intervention's effect; (3) conduct systematic reviews to inform clinical guidelines that incorporate these key elements; (4) using the findings of these systematic reviews, develop quality measures - measures of the structure, process, and outcomes of interventions; and (5) establish methods for successfully implementing and sustaining these interventions in regular practice including the training of providers of these interventions. The recommendations offered in this report are intended to assist policy makers, health care organizations, and payers that are organizing and overseeing the provision of care for mental health and substance use disorders while navigating a new health care landscape. The recommendations also target providers, professional societies, funding agencies, consumers, and researchers, all of whom have a stake in ensuring that evidence-based, high-quality care is provided to individuals receiving mental health and substance use services.
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)
Like many other industries, health care is increasingly turning to digital information and the use of electronic resources. The Institute of Medicine's Roundtable on Value & Science-Driven Health Care hosted three workshops to explore current efforts and opportunities to accelerate progress in improving health and health care with information technology systems.
Determinants of health - like physical activity levels and living conditions - have traditionally been the concern of public health and have not been linked closely to clinical practice. However, if standardized social and behavioral data can be incorporated into patient electronic health records (EHRs), those data can provide crucial information about factors that influence health and the effectiveness of treatment. Such information is useful for diagnosis, treatment choices, policy, health care system design, and innovations to improve health outcomes and reduce health care costs. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 identifies domains and measures that capture the social determinants of health to inform the development of recommendations for the meaningful use of EHRs. This report is the second part of a two-part study. The Phase 1 report identified 17 domains for inclusion in EHRs. This report pinpoints 12 measures related to 11 of the initial domains and considers the implications of incorporating them into all EHRs. This book includes three chapters from the Phase 1 report in addition to the new Phase 2 material. Standardized use of EHRs that include social and behavioral domains could provide better patient care, improve population health, and enable more informative research. The recommendations of Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 will provide valuable information on which to base problem identification, clinical diagnoses, patient treatment, outcomes assessment, and population health measurement.
Although epilepsy is one of the nation's most common neurological disorders, public understanding of it is limited. Many people do not know the causes of epilepsy or what they should do if they see someone having a seizure. Epilepsy is a complex spectrum of disorders that affects an estimated 2.2 million Americans in a variety of ways, and is characterized by unpredictable seizures that differ in type, cause, and severity. Yet living with epilepsy is about much more than just seizures; the disorder is often defined in practical terms, such as challenges in school, uncertainties about social situations and employment, limitations on driving, and questions about independent living. The Institute of Medicine was asked to examine the public health dimensions of the epilepsies, focusing on public health surveillance and data collection; population and public health research; health policy, health care, and human services; and education for people with the disorder and their families, health care providers, and the public. In Epilepsy Across the Spectrum, the IOM makes recommendations ranging from the expansion of collaborative epilepsy surveillance efforts, to the coordination of public awareness efforts, to the engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved care and services. Taking action across multiple dimensions will improve the lives of people with epilepsy and their families. The realistic, feasible, and action-oriented recommendations in this report can help enable short- and long-term improvements for people with epilepsy. For all epilepsy organizations and advocates, local, state, and federal agencies, researchers, health care professionals, people with epilepsy, as well as the public, Epilepsy Across the Spectrum is an essential resource.
Advances in trauma care have accelerated over the past decade, spurred by the significant burden of injury from the wars in Afghanistan and Iraq. Between 2005 and 2013, the case fatality rate for United States service members injured in Afghanistan decreased by nearly 50 percent, despite an increase in the severity of injury among U.S. troops during the same period of time. But as the war in Afghanistan ends, knowledge and advances in trauma care developed by the Department of Defense (DoD) over the past decade from experiences in Afghanistan and Iraq may be lost. This would have implications for the quality of trauma care both within the DoD and in the civilian setting, where adoption of military advances in trauma care has become increasingly common and necessary to improve the response to multiple civilian casualty events. Intentional steps to codify and harvest the lessons learned within the military's trauma system are needed to ensure a ready military medical force for future combat and to prevent death from survivable injuries in both military and civilian systems. This will require partnership across military and civilian sectors and a sustained commitment from trauma system leaders at all levels to assure that the necessary knowledge and tools are not lost. A National Trauma Care System defines the components of a learning health system necessary to enable continued improvement in trauma care in both the civilian and the military sectors. This report provides recommendations to ensure that lessons learned over the past decade from the military's experiences in Afghanistan and Iraq are sustained and built upon for future combat operations and translated into the U.S. civilian system.