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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.
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.
A practical and evidence-based guide for student, pre-registration and qualified pharmacists Symptoms in the Pharmacy is an indispensable guide to the management of common symptoms seen in the pharmacy. With advice from an author team that includes both pharmacists and GPs, the book covers ailments which will be encountered in the pharmacy on a daily basis. Now in its sixth edition Symptoms in the Pharmacy has been fully revised to reflect the latest evidence and availability of new medicines. There are new sections and case studies for 'POM' to 'P' switches including chloramphenicol, sumatriptan, diclofenac, naproxen and amorolfine. This edition features colour photographs of skin conditions for the first time enabling the differentiation and diagnosis of common complaints. The public health and illness prevention content have been expanded to support this increasingly important aspect of the pharmacist’s work. The book is designed for quick and easy reference with separate chapters for each ailment. Each chapter incorporates a decision making framework in which the information necessary for treatment and suggestions on ‘when to refer’ is distilled into helpful summary boxes. At the end of each chapter there are example case studies providing the view of pharmacists, doctors and patients for most conditions covered. These easy-to-follow- chapters can be read cover to cover or turned to for quick reference. This useful guide should be kept close at hand for frequent consultation.
Collaborations that integrate diverse perspectives are critical to addressing many of our complex scientific and societal problems. Yet those engaged in cross-disciplinary team science often face institutional barriers and collaborative challenges. Strategies for Team Science Success offers readers a comprehensive set of actionable strategies for reducing barriers and overcoming challenges and includes practical guidance for how to implement effective team science practices. More than 100 experts--including scientists, administrators, and funders from a wide range of disciplines and professions-- explain evidence-based principles, highlight state-of the-art strategies, tools, and resources, and share first-person accounts of how they’ve applied them in their own successful team science initiatives. While many examples draw from cross-disciplinary team science initiatives in the health domain, the handbook is designed to be useful across all areas of science. Strategies for Team Science Success will inspire and enable readers to embrace cross-disciplinary team science, by articulating its value for accelerating scientific progress, and by providing practical strategies for success. Scientists, administrators, funders, and others engaged in team science will also leave equipped to develop new policies and practices needed to keep pace in our rapidly changing scientific landscape. Scholars across the Science of Team Science (SciTS), management, organizational, behavioral and social sciences, public health, philosophy, and information technology, among other areas of scholarship, will find inspiration for new research directions to continue advancing cross-disciplinary team science.
Telemedicine and telehealth have consistently been shown to be effective for remote areas or limited-resource locations, regular medical and surgical practice, primary care, second opinion, extreme conditions, major crises, and disaster management. The aim of this book is to bring all aspects of telemedicine and e-health to the reader, in a simple, make-sense approach, in one tome. The book is structured in four parts with 29 chapters written by the best experts in the field from around the world, including clinicians, scientists, and administrators of telemedicine programs. Part I deals with basic principles of telemedicine and telepresence. Historical journeys of telemedicine and strategies, building sustainable telemedicine and telehealth programs in the United States and in the Balkans, as well as incorporation of telemedicine in the current ongoing pandemic COVID-19 are well described and are must read. Current technological developments, rules and regulations, legal and business aspects and consent are also addressed. Part II describes strategies for building sustainable telemedicine and telehealth programs. Telehealth patient portals and public-private partnership modes of technology, as well the role of international telemedicine and how to make it work, are valuable chapters of great significance. Part III describes outcomes-based evidence clinical applications of telemedicine in trauma, burns, intensive care, pediatric care, psychiatry, and stroke. Finally, one important chapter for the readers is the telemedicine for prison and jail population. The final part, Part IV depicts surgical telementoring and teleproctoring, a chapter written by 18 various surgical experts, a true gem for the readers. The book ends with promises and hurdles of telemedicine in austere conditions. Telemedicine, Telehealth and Telepresence serves as a valuable resource that focuses on providing patients care from a distance using store and forward technology to live actual performance of operations at a distance.Chapters 1, 6, 12 and 17 are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.
This long awaited Third Edition fully illuminates the patient-centered model of medicine, continuing to provide the foundation for the Patient-Centered Care series. It redefines the principles underpinning the patient-centered method using four major components - clarifying its evolution and consequent development - to bring the reader fully up-to-
Sponsored by the Picker/Commonwealth Program for Patient-Centered Care In this comprehensive, research-based look at the experiences and needs of patients, the authors explore models of care that can make hospitalization more humane. Through the Patient's Eyes provides insights into why some hospitals are more patient-centered than others; how physicians can become more involved in patient-centered quality efforts; and how patient-centered quality can be integrated into health care policy, standards, and regulations. The authors show how, by bringing the patient's perspective to the design and delivery of health services, providers can improve their ability to meet patient's needs and enhance the quality of care.
Patient-reported outcomes (PROs) are measures of how patients feel or what they are able to do in the context of their health status; PROs are reports, usually on questionnaires, about a patient's health conditions, health behaviors, or experiences with health care that individuals report directly, without modification of responses by clinicians or others; thus, they directly reflect the voice of the patient. PROs cover domains such as physical health, mental and emotional health, functioning, symptoms and symptom burden, and health behaviors. They are relevant for many activities: helping patients and their clinicians make informed decisions about health care, monitoring the progress of care, setting policies for coverage and reimbursement of health services, improving the quality of health care services, and tracking or reporting on the performance of health care delivery organizations. We address the major methodological issues related to choosing, administering, and using PROs for these purposes, particularly in clinical practice settings. We include a framework for best practices in selecting PROs, focusing on choosing appropriate methods and modes for administering PRO measures to accommodate patients with diverse linguistic, cultural, educational, and functional skills, understanding measures developed through both classic and modern test theory, and addressing complex issues relating to scoring and analyzing PRO data.
This open access book gives an overview of the sessions, panel discussions, and outcomes of the Advancing the Science of Cancer in Latinos conference, held in February 2018 in San Antonio, Texas, USA, and hosted by the Mays Cancer Center and the Institute for Health Promotion Research at UT Health San Antonio. Latinos – the largest, youngest, and fastest-growing minority group in the United States – are expected to face a 142% rise in cancer cases in coming years. Although there has been substantial advancement in cancer prevention, screening, diagnosis, and treatment over the past few decades, addressing Latino cancer health disparities has not nearly kept pace with progress. The diverse and dynamic group of speakers and panelists brought together at the Advancing the Science of Cancer in Latinos conference provided in-depth insights as well as progress and actionable goals for Latino-focused basic science research, clinical best practices, community interventions, and what can be done by way of prevention, screening, diagnosis, and treatment of cancer in Latinos. These insights have been translated into the chapters included in this compendium; the chapters summarize the presentations and include current knowledge in the specific topic areas, identified gaps, and top priority areas for future cancer research in Latinos. Topics included among the chapters: Colorectal cancer disparities in Latinos: Genes vs. Environment Breast cancer risk and mortality in women of Latin American origin Differential cancer risk in Latinos: The role of diet Overcoming barriers for Latinos on cancer clinical trials Es tiempo: Engaging Latinas in cervical cancer research Emerging policies in U.S. health care Advancing the Science of Cancer in Latinos proves to be an indispensable resource offering key insights into actionable targets for basic science research, suggestions for clinical best practices and community interventions, and novel strategies and advocacy opportunities to reduce health disparities in Latino communities. It will find an engaged audience among researchers, academics, physicians and other healthcare professionals, patient advocates, students, and others with an interest in the broad field of Latino cancer.
Healthcare decision makers in search of reliable information that compares health interventions increasingly turn to systematic reviews for the best summary of the evidence. Systematic reviews identify, select, assess, and synthesize the findings of similar but separate studies, and can help clarify what is known and not known about the potential benefits and harms of drugs, devices, and other healthcare services. Systematic reviews can be helpful for clinicians who want to integrate research findings into their daily practices, for patients to make well-informed choices about their own care, for professional medical societies and other organizations that develop clinical practice guidelines. Too often systematic reviews are of uncertain or poor quality. There are no universally accepted standards for developing systematic reviews leading to variability in how conflicts of interest and biases are handled, how evidence is appraised, and the overall scientific rigor of the process. In Finding What Works in Health Care the Institute of Medicine (IOM) recommends 21 standards for developing high-quality systematic reviews of comparative effectiveness research. The standards address the entire systematic review process from the initial steps of formulating the topic and building the review team to producing a detailed final report that synthesizes what the evidence shows and where knowledge gaps remain. Finding What Works in Health Care also proposes a framework for improving the quality of the science underpinning systematic reviews. This book will serve as a vital resource for both sponsors and producers of systematic reviews of comparative effectiveness research.