The Public Shaping Of Medical Research

Patient organizations and social health movements offer one of the most important and illuminating examples of civil society engagement and participation in scientific research and research politics. Influencing the research agenda, and initiating, funding and accelerating the development of diagnostic tools, effective therapies and appropriate health-care for their area of interest, they may champion alternative, sometimes controversial, programs or critique dominant medical paradigms. Some movements and organizations advocate for medical recognition of contested illnesses, as with fibromyalgia orADHD, while some attempt to "de-medicalize" others, such as obesity or autism. Bringing together an international selection of leading scholars and representatives from patients' organizations, this comprehensive collection explores the interaction between civil society groups and biomedical science, technology development, and research politics. It takes stock of the key findings of the research conducted in the field over the past two decades and addresses emerging problems and future challenges concerning the interrelations between health movements and patient organisations on the one hand, and biomedical research and research policies on the other hand. Combining empirical case studies with conceptual discussion, the book discusses how public participation can contribute to, as well as restrict, the democratization of scientific knowledge production. This volume is an important reference for academics and researchers with an interest in the sociology of health and illness, science and technology studies, the sociology of knowledge, medical ethics or healthcare management and research, as well as medical researchers and those involved with health-related civil society organizations.

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.

Experts estimate that as many as 98,000 people die in any given year from medical errors that occur in hospitals. That's more than die from motor vehicle accidents, breast cancer, or AIDSâ€"three causes that receive far more public attention. Indeed, more people die annually from medication errors than from workplace injuries. Add the financial cost to the human tragedy, and medical error easily rises to the top ranks of urgent, widespread public problems. To Err Is Human breaks the silence that has surrounded medical errors and their consequenceâ€"but not by pointing fingers at caring health care professionals who make honest mistakes. After all, to err is human. Instead, this book sets forth a national agendaâ€"with state and local implicationsâ€"for reducing medical errors and improving patient safety through the design of a safer health system. This volume reveals the often startling statistics of medical error and the disparity between the incidence of error and public perception of it, given many patients' expectations that the medical profession always performs perfectly. A careful examination is made of how the surrounding forces of legislation, regulation, and market activity influence the quality of care provided by health care organizations and then looks at their handling of medical mistakes. Using a detailed case study, the book reviews the current understanding of why these mistakes happen. A key theme is that legitimate liability concerns discourage reporting of errorsâ€"which begs the question, "How can we learn from our mistakes?" Balancing regulatory versus market-based initiatives and public versus private efforts, the Institute of Medicine presents wide-ranging recommendations for improving patient safety, in the areas of leadership, improved data collection and analysis, and development of effective systems at the level of direct patient care. To Err Is Human asserts that the problem is not bad people in health careâ€"it is that good people are working in bad systems that need to be made safer. Comprehensive and straightforward, this book offers a clear prescription for raising the level of patient safety in American health care. It also explains how patients themselves can influence the quality of care that they receive once they check into the hospital. This book will be vitally important to federal, state, and local health policy makers and regulators, health professional licensing officials, hospital administrators, medical educators and students, health caregivers, health journalists, patient advocatesâ€"as well as patients themselves. First in a series of publications from the Quality of Health Care in America, a project initiated by the Institute of Medicine

This book is open access under a CC BY 4.0 license. This book breaks new ground by situating animals and their diseases at the very heart of modern medicine. In demonstrating their historical significance as subjects and shapers of medicine, it offers important insights into past animal lives, and reveals that what we think of as ‘human’ medicine was in fact deeply zoological. Each chapter analyses an important episode in which animals changed and were changed by medicine. Ranging across the animal inhabitants of Britain’s zoos, sick sheep on Scottish farms, unproductive livestock in developing countries, and the tapeworms of California and Beirut, they illuminate the multi-species dimensions of modern medicine and its rich historical connections with biology, zoology, agriculture and veterinary medicine. The modern movement for One Health – whose history is also analyzed – is therefore revealed as just the latest attempt to improve health by working across species and disciplines. This book will appeal to historians of animals, science and medicine, to those involved in the promotion and practice of One Health today.

Based on extensive observations, interviews, and archival research, this book provides an in-depth insight into one of the most crucial forms of regulation around medical research: Research Ethics Committees. Every month, groups of people from all over the United Kingdom decide what kind of research should be carried out on patients within the National Health Service. These groups – Research Ethics Committees (RECs) – made up of doctors, nurses, researchers, and members of the general public – help shape the future of medicine, and play a crucial role in the regulation of a wide range of research from social science to epidemiology, vaccine and drugs trials, and surgery. In providing one of the first empirical examinations of this kind of regulation, this book highlights how, despite the trappings of a modern regulatory system, REC decision making revolves around outdated aspects of social life. Hedgecoe argues that an accurate understanding of this kind of regulation requires an acceptance of the inherently social nature of the processes involved. In placing trust at the centre of ethics decision making, this book challenges the impersonal, de-socialised, and mechanical models of REC decision making that dominate mainstream accounts, and documents the subtle, messy, and complex way in which these bodies decide what kind of research should take place.

In the United States, some populations suffer from far greater disparities in health than others. Those disparities are caused not only by fundamental differences in health status across segments of the population, but also because of inequities in factors that impact health status, so-called determinants of health. Only part of an individual's health status depends on his or her behavior and choice; community-wide problems like poverty, unemployment, poor education, inadequate housing, poor public transportation, interpersonal violence, and decaying neighborhoods also contribute to health inequities, as well as the historic and ongoing interplay of structures, policies, and norms that shape lives. When these factors are not optimal in a community, it does not mean they are intractable: such inequities can be mitigated by social policies that can shape health in powerful ways. Communities in Action: Pathways to Health Equity seeks to delineate the causes of and the solutions to health inequities in the United States. This report focuses on what communities can do to promote health equity, what actions are needed by the many and varied stakeholders that are part of communities or support them, as well as the root causes and structural barriers that need to be overcome.

A critical examination of translational medicine, when private risk is transferred to the public sector and university research teams become tech startups for global investors. A global shift has secretly transformed science and medicine. Starting in 2003, biomedical research in the West has been reshaped by the emergence of translational science and medicine—the idea that the aim of research is to translate findings as quickly as possible into medical products. In The Market in Mind, Mark Dennis Robinson charts this shift, arguing that the new research paradigm has turned university research teams into small biotechnology startups and their industry partners into early-stage investment firms. There is also a larger, surprising consequence from this shift: according to Robinson, translational science and medicine enable biopharmaceutical firms, as part of a broader financial strategy, to outsource the riskiest parts of research to nonprofit universities. Robinson examines the implications of this new configuration. What happens, for example, when universities absorb unknown levels of risk? Robinson argues that in the years since the global financial crisis translational science and medicine has brought about “the financialization of health.” Robinson explores such topics as shareholder anxiety and industry retreat from Alzheimer's and depression research; how laboratory research is understood as health innovation even when there is no product; the emergence of investor networking events as crucial for viewing science in a market context; and the place of patients in research decisions. Although translational medicine justifies itself by the goal of relieving patients' suffering, Robinson finds patients' voices largely marginalized in translational neuroscience.

The anthrax incidents following the 9/11 terrorist attacks put the spotlight on the nation's public health agencies, placing it under an unprecedented scrutiny that added new dimensions to the complex issues considered in this report. The Future of the Public's Health in the 21st Century reaffirms the vision of Healthy People 2010, and outlines a systems approach to assuring the nation's health in practice, research, and policy. This approach focuses on joining the unique resources and perspectives of diverse sectors and entities and challenges these groups to work in a concerted, strategic way to promote and protect the public's health. Focusing on diverse partnerships as the framework for public health, the book discusses: The need for a shift from an individual to a population-based approach in practice, research, policy, and community engagement. The status of the governmental public health infrastructure and what needs to be improved, including its interface with the health care delivery system. The roles nongovernment actors, such as academia, business, local communities and the media can play in creating a healthy nation. Providing an accessible analysis, this book will be important to public health policy-makers and practitioners, business and community leaders, health advocates, educators and journalists.