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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.
It has been claimed by fertility experts that embryos can be screened for 6,000 diseases, thereby the risk of x-linked diseases can be minimised by 'cherry-picking' male embryos that do not carry the abnormal gene. If medical scientists continue to strive for cures, genetic aberrance in human could be a phenomenon of the past...This challenging book explores issues of professional integrity and ethics underpinning medical research. It includes real-life case studies where public trust in medical research has been misplaced and encourages medical professionals to adhere to professional codes of conduct and be informed about their decision making process. It is vital reading for undergraduate and postgraduate students of medicine, law, sociology and social policy, philosophy, health related research and ethics. Practising researchers in medicine and the pharmaceutical industry, and their managers will find it invaluable. The text provides motivation for academics and educators with an interest in research and governance. Healthcare policy makers and shapers, patient rights groups, campaigners and the general media will find the information enlightening. "Over the last four decades, medicine has given hope to many people and saved many lives as a result of the ability of the physicians and surgeons to develop new treatments and innovative surgical techniques. While we can celebrate the success of medical science, we should also critically examine some of these developments against principles and in the light of public opinion." - Philip Cheung.
Why the social character of scientific knowledge makes it trustworthy Are doctors right when they tell us vaccines are safe? Should we take climate experts at their word when they warn us about the perils of global warming? Why should we trust science when so many of our political leaders don't? Naomi Oreskes offers a bold and compelling defense of science, revealing why the social character of scientific knowledge is its greatest strength—and the greatest reason we can trust it. Tracing the history and philosophy of science from the late nineteenth century to today, this timely and provocative book features a new preface by Oreskes and critical responses by climate experts Ottmar Edenhofer and Martin Kowarsch, political scientist Jon Krosnick, philosopher of science Marc Lange, and science historian Susan Lindee, as well as a foreword by political theorist Stephen Macedo.
Perspectives from organizational theory, social psychology, sociology and economics are brought together in this volume to provide a broad coverage of trust, including the psychological and social antecedents of trust.
Does trust still matter in health care and who does it matter to? Have trust relations changed in the 'New' NHS? What does trust mean to patients, clinicians and managers? In the NHS trust has traditionally played an important part in the relationships between its three key actors: the state, health care practitioners and patients. However, in recent years the environments in which these relationships operate have been subject to considerable change as the NHS has been modernised. Patients are now expected to play a more active role, both in self-managing their illness and in choice of care provider and clinicians are expected to work in teams and in partnership with managers. This unique book explores the importance of trust, how it is lost and won and the extent to which trust relationships in health care may have changed. The book combines theoretical and empirical analysis, while also examining the role of policy. Calnan and Rowe analyse data collected from interviews with patients, health care professionals and managers in primary care and acute care settings. Among the issues covered are: The importance of trust to their relationships What constitutes high and low trust behaviour The changing nature of trust relations between patients, clinicians and managers How trust can be built and sustained How interpersonal trust affects institutional trust Trust Matters in Health Care is key reading for policy makers, health care professionals and managers in the public and private sector, and a useful resource for educators and students within health and social care and management studies.
It takes 17 years on average to bring new medical treatments ideas into evidence-based clinical practice. The growing replicability crisis in science further delays these "new miracles." Blockchain can improve science and accelerate medical research while bringing a new layer of trust to healthcare. This book is about science, its value to medicine, and how we can use blockchain to improve the quality and impact of both. The book looks at science and medicine from an insider's perspective and describes the processes, successes, shortcomings and opportunities in an accessible way for a broad audience. It weaves this a non-technical look at the emerging world of blockchain technology; what it is, where it is useful, and how it can improve science and medicine. It lays out a roadmap for this application to transform how we develop knowledge about health and medicine to improve our lives. In the first part, Blockchain isn't Tech, the authors look at blockchain/distributed ledger technology along with critical trade-offs and current explorations of its utility. They give an overview of use cases for the technology across industries, including finance, manufacturing and healthcare, with interviews and insights from leaders across government, academia, and tech/health industry both big and start-up. In the second part, Science is Easy, the authors look at science as a process and how this drives advancement in medicine. They shed a light on some of science's shortcomings, including the reproducibility crisis and problems with misaligned incentives (i.e. publish or perish). They apply a breakdown of critical components to the functional steps in the scientific process and outline how the open science movement is looking to improve these, while highlighting the limit of these fixes with current technology, incentives and structure of science. In the third part, DAO of Science, the authors look at how blockchain applied to open science can impact medical research. They examine how this distributed approach can provide better quality science, value-based research and faster medical miracles. Finally, they provide a vision of the future of distributed medical research and give a roadmap of steps to get there.
In Spirituality and Health Research: Methods, Measurement, Statistics, and Resources, Dr. Harold G. Koenig leads a comprehensive overview of this complex subject. Dr. Koenig is one of the world’s leading authorities on the relationship between spirituality and health, and a leading researcher on the topic. As such, he is distinctively qualified to author such a book. This unique source of information on how to conduct research on religion, spirituality, and health includes practical information that goes well beyond what is typically taught in most undergraduate, graduate, or even post-doctoral level courses. This volume reviews what research has been done, discusses the strengths and limitations of that research, provides a research agenda for the future that describes the most important studies that need to be done to advance the field, and describes how to actually conduct that research (design, statistical analysis, and publication of results). It also covers practical matters such as how to write fundable grants to support the research, where to find sources of funding support for research in this area, and what can be done even if the researcher has little or no funding support. The information gathered together here, which has been reviewed for accuracy and comprehensiveness by research design and statistical experts, has been acquired during a span of over twenty-five years that Dr. Koenig spent conducting research, reviewing others’ research, reviewing research grants, and interacting with mainstream biomedical researchers both within and outside the field of spirituality and health. The material is presented in an easy to read and readily accessible form that will benefit researchers at almost any level of training and experience.
The level of trust in an organization's culture will ultimately determine whether or not it is trustful, healthy and successful. This text is based on interviews with chief executive officers from profit and non-profit organizations, who record their experiences in creating trust in their environment and their perceptions of the health of their organizations. The collected data reveals: the qualities of a "trusted" leader; how they created trust or how trust was destroyed in organizations; how leaders worked in distrustful environments; and how to create a more healthy organization.
Advances in medical, biomedical and health services research have reduced the level of uncertainty in clinical practice. Clinical practice guidelines (CPGs) complement this progress by establishing standards of care backed by strong scientific evidence. CPGs are statements that include recommendations intended to optimize patient care. These statements are informed by a systematic review of evidence and an assessment of the benefits and costs of alternative care options. Clinical Practice Guidelines We Can Trust examines the current state of clinical practice guidelines and how they can be improved to enhance healthcare quality and patient outcomes. Clinical practice guidelines now are ubiquitous in our healthcare system. The Guidelines International Network (GIN) database currently lists more than 3,700 guidelines from 39 countries. Developing guidelines presents a number of challenges including lack of transparent methodological practices, difficulty reconciling conflicting guidelines, and conflicts of interest. Clinical Practice Guidelines We Can Trust explores questions surrounding the quality of CPG development processes and the establishment of standards. It proposes eight standards for developing trustworthy clinical practice guidelines emphasizing transparency; management of conflict of interest ; systematic review-guideline development intersection; establishing evidence foundations for and rating strength of guideline recommendations; articulation of recommendations; external review; and updating. Clinical Practice Guidelines We Can Trust shows how clinical practice guidelines can enhance clinician and patient decision-making by translating complex scientific research findings into recommendations for clinical practice that are relevant to the individual patient encounter, instead of implementing a one size fits all approach to patient care. This book contains information directly related to the work of the Agency for Healthcare Research and Quality (AHRQ), as well as various Congressional staff and policymakers. It is a vital resource for medical specialty societies, disease advocacy groups, health professionals, private and international organizations that develop or use clinical practice guidelines, consumers, clinicians, and payers.