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Health Systems Research Training Series: Vol. 3: Strategies for involv
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.
The Health Care Policy Process enables the reader to develop a clear understanding of the scope and objectives of health policy studies, to analyze the extent to which policies can be changed or influenced by those involved at the different stages of the policy process, and to assess both the need and the scope for change. The author considers the relationship between planning and policy, looks at key concepts in analyzing health care issues, and examines some of the debates overshadowing today's health policy agenda.
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.
Health care has been called one of the most complex sectors of the U.S. economy. Driven largely by robust innovation in treatments and interventions, this complexity has created an increased need for evidence about what works best for whom in order to inform decisions that lead to safe, efficient, effective, and affordable care. As health care becomes more digital, clinical datasets are becoming larger and more numerous. By realizing the potential of knowledge generation that is more closely integrated with the practice of care, it should be possible not only to produce more usable evidence to inform decisions, but also to increase the efficiency and decrease the costs of doing clinical research. Patient-Centered Clinical Research Network, or PCORnet, is a nation-wide patient-centered clinical research network intended to form a resource of clinical, administrative, and patient data that can be used to carry out observational and interventional research studies and enhance the use of clinical data to advance the learning health care system. The primary goal of the first phase of PCORnet will be to establish the data infrastructure necessary to do such research. In April and June 2014 the Institute of Medicine's Roundtable on Value and Science-Driven Health Care convened two workshops aimed at accelerating progress toward real-time knowledge generation through the seamless integration of clinical practice and research, one of the fundamental concepts of a continuously learning health system, centered on the development of the PCORnet. The first workshop brought together health care system leaders, both administrative and clinical, and researchers to consider issues and strategic priorities for building a successful and durable clinical research network and facilitate progress toward a continuously learning health care system more broadly, including issues related to science, technology, ethics, business, regulatory oversight, sustainability, and governance. The second workshop focused on implementation approaches. Health system CEOs convened to consider strategic priorities and explore approaches to implementation. These workshops will inform the decisions of field leaders moving forward, including PCORI, the PCORnet steering committee, and PCORnet grantees. Integrating Research and Practice is the summary of the presentations and discussions of the workshops.
In a health care environment undergoing major restructuring, health services researchers have an important contribution to make in evaluating the impact of change and in guiding policymakers, clinicians, corporate purchasers, and patients. This book examines the health services research work force and its education. Conclusions focus on the quantity and quality of the work force, prospects for the future, and directions for government policy.
A growing body of research identifies strong links between children’s health, social and educational outcomes; it also notes the reciprocal benefits of access to quality education on individual and family health status. In response to these findings, the World Health Organization developed the concept of the Health-Promoting School (HPS), a living catalyst for healthy lives, and for positive changes that students can take home and into the community. Case Studies in Global School Health Promotion provides readers with a theoretical and research base needed to understand the methods used in communities all over the world to put this captivating concept in place. Case examples from over two dozen countries (representing urban and rural areas in developing and developed nations) outline the strategies taken to implement HPS programs in individual schools, municipalities, and nations. For each program, case study authors explain the problems they tackled, their motivation and supports to respond creatively; and the barriers they faced. In the cases, authors describe the capacities and infrastructure they created and mechanisms for cooperation; as well as the personnel, financial, and time requirements involved. Case studies were drawn from the following regions: Africa The Americas Europe Eastern Mediterranean South and Southeast Asia Western Pacific. Case Studies in Global School Health Promotion offers a world of insights, ideas, and guidance to those addressing social determinants of health at this formative stage, including: education and health policy makers; professionals and administrators; and researchers in national governments, universities, local schools, community, non-governmental organizations and civil society. The material provides interesting and useful information to those dedicated to these issues within WHO, FRESH Partners and other United Nations agencies. It is also an instructive text for graduate students in public health, education, allied health professions and social sciences.
Randomized clinical trials (RCTs) are often referred to as the "gold standard" of clinical research. However, in its current state, the U.S. clinical trials enterprise faces substantial challenges to the efficient and effective conduct of research. Streamlined approaches to RCTs, such as large simple trials (LSTs), may provide opportunities for progress on these challenges. Clinical trials support the development of new medical products and the evaluation of existing products by generating knowledge about safety and efficacy in pre- and post-marketing settings and serve to inform medical decision making and medical product development. Although well-designed and -implemented clinical trials can provide robust evidence, a gap exists between the evidence needs of a continuously learning health system, in which all medical decisions are based on the best available evidence, and the reality, in which the generation of timely and practical evidence faces significant barriers. Large Simple Trials and Knowledge Generation in a Learning Health System is the summary of a workshop convened by the Institute of Medicine's Roundtable on Value & Science-Driven Health Care and the Forum on Drug Discovery, Development, and Translation. Experts from a wide range of disciplines-including health information technology, research funding, clinical research methods, statistics, patients, product development, medical product regulation, and clinical outcomes research-met to marshal a better understanding of the issues, options, and approaches to accelerating the use of LSTs. This publication summarizes discussions on the potential of LSTs to improve the speed and practicality of knowledge generation for medical decision making and medical product development, including efficacy and effectiveness assessments, in a continuously learning health system. Large Simple Trials and Knowledge Generation in a Learning Health System explores acceleration of the use of LSTs to improve the speed and practicality of knowledge generation for medical decision making and medical product development; considers the concepts of LST design, examples of successful LSTs, the relative advantages of LSTs, and the infrastructure needed to build LST capacity as a routine function of care; identifies structural, cultural, and regulatory barriers hindering the development of an enhanced LST capacity; discusses needs and strategies in building public demand for and participation in LSTs; and considers near-term strategies for accelerating progress in the uptake of LSTs in the United States.
Biomedical scientists' concern about the future of funding of health science research prompted this volume's exploration of the financing of the entire health research enterprise and the complex reasons underlying these increasing concerns. The committee presents clear-cut recommendations for improving allocation policies to ensure a balanced distribution of resources that will allow the biomedical research community to build on exciting recent discoveries in many areas. Funding Health Sciences Research also provides the first-ever comprehensive reports on the 1980s policies that have affected the research landscape, including stabilization, downward negotiation, and extended grant duration.