Pediatrician's Guide to Discussing Research with Patients


Book Description

With the proliferation of research studies posted online, media outlets scrambling to pick up stories, and individuals posting unverified information via social media, the landscape for parents trying to understand the latest science as it pertains to their children has never been more challenging to navigate. This book is intended to assist pediatricians when discussing research findings with parents. It provides an overview of research practices and terminology, clarifies misconceptions about studies and findings, and explains the limitations of research when applied to medical decision making. Through this framework, physicians can explain their reasoning behind specific clinical recommendations. In addition to examining the broad concepts comprising research literacy, this book reviews the current findings in topics that pediatricians report discussing most often with parents, such as vaccines, diet, medications, and sleep. Pediatrician’s Guide to Discussing Research with Patients is a unique resource for pediatricians in encouraging the development of research literacy in their patients.




Beyond the HIPAA Privacy Rule


Book Description

In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.




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.




Dying in America


Book Description

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.




Ethical Conduct of Clinical Research Involving Children


Book Description

In recent decades, advances in biomedical research have helped save or lengthen the lives of children around the world. With improved therapies, child and adolescent mortality rates have decreased significantly in the last half century. Despite these advances, pediatricians and others argue that children have not shared equally with adults in biomedical advances. Even though we want children to benefit from the dramatic and accelerating rate of progress in medical care that has been fueled by scientific research, we do not want to place children at risk of being harmed by participating in clinical studies. Ethical Conduct of Clinical Research Involving Children considers the necessities and challenges of this type of research and reviews the ethical and legal standards for conducting it. It also considers problems with the interpretation and application of these standards and conduct, concluding that while children should not be excluded from potentially beneficial clinical studies, some research that is ethically permissible for adults is not acceptable for children, who usually do not have the legal capacity or maturity to make informed decisions about research participation. The book looks at the need for appropriate pediatric expertise at all stages of the design, review, and conduct of a research project to effectively implement policies to protect children. It argues persuasively that a robust system for protecting human research participants in general is a necessary foundation for protecting child research participants in particular.




Field Guide to the Difficult Patient Interview


Book Description

Written by physicians skilled at coaching colleagues in physician-patient communication, this pocket guide presents practical strategies for handling a wide variety of difficult patient interviews. Each chapter presents a hypothetical scenario, describes effective communication techniques for each phase of the interaction, and identifies pitfalls to avoid. The presentation includes examples of physician-patient dialogue, illustrations showing body language, and key references. This edition includes new chapters on caring for physician-patients, communicating with colleagues, disclosing unexpected outcomes and medical errors, shared decision making and informed consent, and teaching communication skills. Other new chapters describe clinical attitudes such as patience, curiosity, and hope.




Safe and Effective Medicines for Children


Book Description

The Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) were designed to encourage more pediatric studies of drugs used for children. The FDA asked the IOM to review aspects of pediatric studies and changes in product labeling that resulted from BPCA and PREA and their predecessor policies, as well as assess the incentives for pediatric studies of biologics and the extent to which biologics have been studied in children. The IOM committee concludes that these policies have helped provide clinicians who care for children with better information about the efficacy, safety, and appropriate prescribing of drugs. The IOM suggests that more can be done to increase knowledge about drugs used by children and thereby improve the clinical care, health, and well-being of the nation's children.




Impacts of Climate Change on Human Health in the United States


Book Description

As global climate change proliferates, so too do the health risks associated with the changing world around us. Called for in the President’s Climate Action Plan and put together by experts from eight different Federal agencies, The Impacts of Climate Change on Human Health: A Scientific Assessment is a comprehensive report on these evolving health risks, including: Temperature-related death and illness Air quality deterioration Impacts of extreme events on human health Vector-borne diseases Climate impacts on water-related Illness Food safety, nutrition, and distribution Mental health and well-being This report summarizes scientific data in a concise and accessible fashion for the general public, providing executive summaries, key takeaways, and full-color diagrams and charts. Learn what health risks face you and your family as a result of global climate change and start preparing now with The Impacts of Climate Change on Human Health.




Pediatric Uroradiology


Book Description

This fully updated and revised edition of a classic work takes full account of recent dramatic changes in the subject area. It describes in detail all aspects of pediatric uroradiology, embracing both recent developments and established concepts. New chapters have been added, for example on genetics in nephrourology and clinical management of important nephrourologic disorders. Short conclusions are included at the end of sections to provide the reader with key information.




Handbook of Research in Pediatric and Clinical Child Psychology


Book Description

The professional development of researchers is critical for the future development ofthe fields of pediatric and clinical child psychology. In order to conduct research in pediatric and clinical child psychology, researchers need to work with a wide range of populations and master an increasingly wide range of skills, many of which are either not formally taught or considered in sufficient depth in clinical training. Such skills include the development of resources for research by writing grants to government agencies and foundations; skills in preparing research for publications concerning original research, review articles, or case reports; scien tific presentation skills; the ability to review and edit scientific manuscripts; and to implement and manage research in applied settings. Moreover, the increasing complexity of research in pediatric and clinical child psychology requires success ful researchers in these fields to develop their expertise with a wide range of new specialized methodologies, data analytic methods, models of data analysis, and methods of assessment. Finally, to enhance the relevance of their research to practice, researchers in pediatric and clinical child psychology need to integrate their work with clinical service delivery programs that are based on empirical research. The necessity to train researchers in pediatric and clinical child psychology in such multifaceted knowledge and skills places extraordinary burdens on profes sional training programs. Professional researchers in pediatric and child clinical psychology also are challenged to develop new knowledge and skills through continuing education and faculty development programs.