Charlotte Raven had never heard of Huntington's Disease when, in her mid-thirties, she discovered that her father was suffering from the illness. Life for her and her young family would never be the same again. Patient 1 is her brutally candid account of coming to terms with this inherited neurodegenerative disease, which can manifest at any time in life for people who carry the faulty gene. As the illness began to take hold of Raven's body, mind and memory, she began to write. She wrote like her life depended on it -- and in many ways she believed it did. Frank and fearless, Patient 1 is an act of self-preservation and a kind of reckoning -- with the illness, with the person she once was, with the person she is now. In an afterword, Raven's doctor Ed Wild explains how doctors and patients like Charlotte are working together in the hope of one day eliminating this disease altogether.

'Searingly honest and important' RACHEL CLARKE Honest, intelligent and unsentimental, Patient 1 is a startling self-portrait written with wit and vulnerability, and a unique testament to the power of hope in the face of illness. Charlotte Raven had never heard of Huntington's Disease when, in her mid-thirties, she discovered that her father was suffering from the illness. Life for her and her young family would never be the same again. Frank and fearless, this is her memoir of coming to terms with this inherited neurodegenerative disease and its impact on her body, mind and memory. It is at once an act of self-preservation and a kind of reckoning: with the illness, with the person she once was and with the person she is now. In an afterword, Raven's doctor Ed Wild - one of the country's leading experts in Huntington's - explains how doctors and patients like Charlotte are working together in the hope of one day eliminating this disease altogether. 'Insightful, frank and often moving...Raven writes with humour...and no small amount of courage' Guardian Shortlisted for the RSL Christopher Bland Prize 2022

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.

Seven former best friends reunite and struggle to heal after the tragic death of one of their own in this evocative and heartrending novel from the New York Times bestselling author of The Gift and Her Secret. When word had gotten out that Andy Warner had committed suicide, everyone in Walnut Creek, Ohio, had been shocked. For seven men and women in their twenties, some Amish, some Mennonite, and some English, each of whom had once counted his or herself as one of Andy’s best friends, it had been extremely painful. And, maybe, a source of guilt. Years have passed since they’d all been together last. Some of them got into trouble. A couple got into arguments. Eventually they all drifted apart. But even though none of them really saw each other anymore, there was a steadfast certainty that they’d always have each other’s backs—even when no one else did. Their bond was that strong…until Andy did the unthinkable. Now the seven remaining friends, still reeling from Andy’s death, have vowed to look after each other again. As far as they’re concerned, it doesn’t matter that they’re now in their twenties and have drifted far apart. They need to connect again…for Andy. With her signature “taut writing” (RT Book Reviews), Shelley Shepard Gray delivers a lyrical and heartfelt tale of friendship and forgiveness.

"In Great Dames, Marie Benner introduces us to a pantheon of women whose lives are both gloriously individual and yet somehow universal. Her subjects range from Jacqueline Kennedy Onassis, who found happiness in her last decade, to Constance Baker Motley, who argued Brown versus the Board of Education before the United States Supreme Court, to Luise Rainer, who won two Academy Awards by age thirty, then fled Hollywood for good. We meet Kitty Carlisle Hart, a professional charmer and tireless advocate of the arts, and Diana Trilling, the intellectual's intellectual, who published her final, splendid memoir at age ninety-one. There are even the Becky Sharps, who maneuvered powerful men to help them ascend: Marietta Tree, Pamela Harriman, and Clare Boothe Luce. And the wonderfully flamboyant Kay Thompson, whose pint-sized creation, Eloise, gave her a place in American cultural history. Finally, there is Thelma Brenner, who was the first great dame her daughter ever knew." "These are women who helped shape a century. Marie Brenner's portraits are intimate, vivid, and true, and full of subtle but important lessons. The way the great dames lived their lives - their rules, their codes, their insistence on certain fundamentals - are models that today's women should consider as they ascend to positions of leadership in a new millennium."--BOOK JACKET.Title Summary field provided by Blackwell North America, Inc. All Rights Reserved

Argues for a health care system that would restore power and responsibility to the individual consumer and taking it out of the hands of government and insurance companies

A comprehensive, evidence-based introduction to the principles and practices of patient communication in a clinical setting Endorsed by the American Academy on Communication for Healthcare Updated and expanded by a multidisciplinary team of medical experts, Smith’s Patient-Centered Interviewing, Third Edition presents a step-by-step methodology for mastering every aspect of the medical interview. You will learn how to confidently obtain from patients accurate biomedical facts, as well as critical personal, social, and emotional information, allowing you to make precise diagnoses, develop effective treatment plans, and forge strong clinician-patient relationships. The most evidence-based guide available on this topic, Smith’s Patient-Centered Interviewing applies the proven 5-Step approach, which integrates patient- and clinician-centered skills to improve effectiveness without adding extra time to the interview’s duration. Smith’s Patient-Centered Interviewing covers everything from patient-centered and clinician-centered interviewing skills, such as: Patient education Motivating for behavior change Breaking bad news Managing different personality styles Increasing personal awareness in mindful practice Nonverbal communication Using computers in the exam room Reporting and presenting evaluations Companion video and teaching supplement are available online. Read details inside the book.

The essential guide by one of America's leading doctors to how digital technology enables all of us to take charge of our health A trip to the doctor is almost a guarantee of misery. You'll make an appointment months in advance. You'll probably wait for several hours until you hear "the doctor will see you now"-but only for fifteen minutes! Then you'll wait even longer for lab tests, the results of which you'll likely never see, unless they indicate further (and more invasive) tests, most of which will probably prove unnecessary (much like physicals themselves). And your bill will be astronomical. In The Patient Will See You Now, Eric Topol, one of the nation's top physicians, shows why medicine does not have to be that way. Instead, you could use your smartphone to get rapid test results from one drop of blood, monitor your vital signs both day and night, and use an artificially intelligent algorithm to receive a diagnosis without having to see a doctor, all at a small fraction of the cost imposed by our modern healthcare system. The change is powered by what Topol calls medicine's "Gutenberg moment." Much as the printing press took learning out of the hands of a priestly class, the mobile internet is doing the same for medicine, giving us unprecedented control over our healthcare. With smartphones in hand, we are no longer beholden to an impersonal and paternalistic system in which "doctor knows best." Medicine has been digitized, Topol argues; now it will be democratized. Computers will replace physicians for many diagnostic tasks, citizen science will give rise to citizen medicine, and enormous data sets will give us new means to attack conditions that have long been incurable. Massive, open, online medicine, where diagnostics are done by Facebook-like comparisons of medical profiles, will enable real-time, real-world research on massive populations. There's no doubt the path forward will be complicated: the medical establishment will resist these changes, and digitized medicine inevitably raises serious issues surrounding privacy. Nevertheless, the result-better, cheaper, and more human health care-will be worth it. Provocative and engrossing, The Patient Will See You Now is essential reading for anyone who thinks they deserve better health care. That is, for all of us.

Patient-oriented approaches to healthcare management have been brought to the fore in recent years, yet this book underlines how even further change is needed in order to fully mobilise the experiential knowledge of patients, and ultimately improve our healthcare systems. With contributions from scholars and patients across the globe, this collection brings together a comprehensive overview of major achievements in patient engagement, analysing political, organizational and clinical contexts. By understanding the concept of care partnership, the authors explore how this patient revolution could transform, improve and innovate the ways in which care services are organized and delivered. Looking closely at the role of new technologies, this timely book will undoubtedly be of use to patients, managers and professionals within the healthcare industry, as well as those researching health policy and organization.

Although the need for improved care for dying patients is widely recognized and frequently discussed, few books address the needs of the physicians, nurses, social workers, therapists, hospice team members, and pastoral counselors involved in care. Care of the Dying Patient contains material not found in other sources, offering advice and solutions to anyone—professional caregiver or family member—confronted with incurable illness and death. Its authors have lectured and published extensively on care of the dying patient and here review a wide range of topics to show that relief of physical suffering is not the only concern in providing care. This collection encompasses diverse aspects of end-of-life care across multiple disciplines, offering a broad perspective on such central issues as control of pain and other symptoms, spirituality, the needs of caregivers, and special concerns regarding the elderly. In its pages, readers will find out how to: effectively utilize palliative-care services and activate timely referral to hospice, arrange for care that takes into account patients’ cultural beliefs, and respond to spiritual and psychological distress, including the loss of hope that often overshadows physical suffering. The authors especially emphasize palliative care and hospice, since some physicians fear that such referrals may be viewed by patients and families as abandonment. They also address ethical and legal risks in pain management and warn that fear of overprescribing pain medication may inadvertently lead to ineffective pain relief and even place the treating team at risk of liability for undertreatment of pain. While physicians have the ability to treat disease, they also help to determine the time and place of death, and they must recognize that end-of-life choices are made more complex than ever before by advances in medicine and at the same time increasingly important. Care of the Dying Patient addresses some of the challenges frequently confronted in terminal care and points the way toward a more compassionate way of death.