Download or read book The Voice of 12 000 Patients Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe written by and published by EURORDIS - Rare Diseases Eu. This book was released on 2009 with total page 325 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book THE VOICE OF 12 000 PATIENTS EXPERIENCES AND EXPECTATIONS OF RARE DISEASE PATIENTS ON DIAGNOSIS AND CARE IN EUROPE written by C. NOURISSIER and published by . This book was released on 2009 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book The Importance of Genetic Literacy and Education in Medicine written by Nina Pereza and published by Frontiers Media SA. This book was released on 2022-05-24 with total page 91 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book The Public Shaping of Medical Research written by Peter Wehling and published by Routledge. This book was released on 2014-11-27 with total page 309 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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. 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 or healthcare management and research, as well as medical researchers and those involved with health-related civil society organizations.
Download or read book Handbook Integrated Care written by Volker Amelung and published by Springer Nature. This book was released on 2021-07-12 with total page 1212 pages. Available in PDF, EPUB and Kindle. Book excerpt: This handbook shares profound insights into the main principles and concepts of integrated care. It offers a multi-disciplinary perspective with a focus on patient orientation, efficiency, and quality by applying widely recognized management approaches to the field of healthcare. The handbook also highlights international best practices and shows how integrated care can work in various health systems. In the majority of health systems around the world, the delivery of healthcare and social care is characterised by fragmentation and complexity. Consequently, much of the recent international discussion in the fields of health policy and health management has focused on the topic of integrated care. “Integrated” acknowledges the complexity of patients’ needs and aims to meet them by taking into account both health and social care aspects. Changing and improving processes in a coordinated way is at the heart of this approach. The second edition offers new chapters on people-centredness, complexity theories and evaluation methods, additional management tools and a wealth of experiences from different countries and localities. It is essential reading both for health policymakers seeking inspiration for legislation and for practitioners involved in the management of public health services who want to learn from good practice.
Download or read book Public Health and Informatics written by J. Mantas and published by IOS Press. This book was released on 2021-07 with total page 1184 pages. Available in PDF, EPUB and Kindle. Book excerpt: For several years now, both eHealth applications and digitalization have been seen as fundamental to the new era of health informatics and public health. The current pandemic situation has also highlighted the importance of medical informatics for the scientific process of evidence-based reasoning and decision making at all levels of healthcare. This book presents the accepted full papers, short papers, and poster papers delivered as part of the 31st Medical Informatics in Europe Conference (MIE 2021), held virtually from 29-31 May 2021. MIE 2021 was originally due to be held in Athens, Greece, but due to the continuing pandemic situation, the conference was held as a virtual event. The 261 papers included here are grouped into 7 chapters: biomedical data, tools and methods; supporting care delivery; health and prevention; precision medicine and public health; human factors and citizen centered digital health; ethics, legal and societal aspects; and posters. Providing a state-of-the-art overview of medical informatics from around the world, the book will be of interest to all those working with eHealth applications and digitalization to improve the delivery of healthcare today.
Download or read book Caregiving and Social Support in the Context of Health and Illness written by Sabrina Cipolletta and published by Frontiers Media SA. This book was released on 2021-02-09 with total page 300 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book The Knowledgeable Patient written by Sophie Hill and published by John Wiley & Sons. This book was released on 2011-08-24 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: Learn how to place communication and participation at the heart of evidence-based healthcare The Knowledgeable Patient: Communication and Participation in Health sits at the forefront of the challenging, changing 21st century landscape. The 'knowledgeable patient' as an individual can take many forms: patient, family carer, consumer advocate, or member of the public interested in health issues. In each of these roles, knowledgeable patients interact with health professionals by asking questions about the evidence for treatment, seeking support, exchanging views, and contributing experiences and new ideas on how to improve the health system. Drawing from several research paradigms, The Knowledgeable Patient is an essential guide to a new era of complex healthcare. Integrating consumer stories and evidence from systematic reviews, it examines key communication and participation issues in a range of contexts, including: surgery safe medicine use chronic disease self management the complexity of multimorbidity notification of rare disease risk. The Knowledgeable Patient is international in scope with researched examples spanning living in the community, health service treatment, governance, and policy making. It provides health professionals with new ideas, concepts, evidence, and practical tools to understand the central role of communication and participation to a well-functioning health system. It is an ideal reference for undergraduate and postgraduate students studying the health sciences. Watch a video about The Knowledgeable Patient: Communication and Participation in Health from the author, Sophie Hill: bit.ly/xNYCqG
Download or read book Patient Involvement in Health Technology Assessment written by Karen M. Facey and published by Springer. This book was released on 2017-05-15 with total page 431 pages. Available in PDF, EPUB and Kindle. Book excerpt: This is the first book to offer a comprehensive guide to involving patients in health technology assessment (HTA). Defining patient involvement as patient participation in the HTA process and research into patient aspects, this book includes detailed explanations of approaches to participation and research, as well as case studies. Patient Involvement in HTA enables researchers, postgraduate students, HTA professionals and experts in the HTA community to study these complementary ways of taking account of patients’ knowledge, experiences, needs and preferences. Part I includes chapters discussing the ethical rationale, terminology, patient-based evidence, participation and patient input. Part II sets out methodology including: Qualitative Evidence Synthesis, Discrete Choice Experiments, Analytical Hierarchy Processes, Ethnographic Fieldwork, Deliberative Methods, Social Media Analysis, Patient-Reported Outcome Measures, patients as collaborative research partners and evaluation. Part III contains 15 case studies setting out current activities by HTA bodies on five continents, health technology developers and patient organisations. Each part includes discussion chapters from leading experts in patient involvement. A final chapter reflects on the need to clearly define the goals for patient involvement within the context of the HTA to identify the optimal approach. With cohesive contributions from more than 80 authors from a variety of disciplines around the globe, it is hoped this book will serve as a catalyst for collaboration to further develop patient involvement to improve HTA. "If you’re not involving patients, you're not doing HTA!" - Dr. Brian O’Rourke, President and CEO of CADTH, Chair of INAHTA
Download or read book Advocacy in Neurology written by Wolfgang Grisold and published by Oxford University Press. This book was released on 2019-02-21 with total page 427 pages. Available in PDF, EPUB and Kindle. Book excerpt: Advocacy is a broad term that covers activities aimed at increasing attention, awareness, information, nursing, treatment, and support to improve the outcome of patients. These actions can be focused directly towards patients or indirectly via third parties. Although advocacy is present in all medical specialties, neurology in particular finds itself in need of strong advocacy tools as the diagnosis, treatment, long-term care and associated resource, and social issues have become increasingly complex. While some physicians implicitly or explicitly act as advocates, there is a lack of holistic research in order to clarify the meaning of advocacy along with concrete methods and strategies. Advocacy in Neurology provides an integrated approach to the concept of advocacy in neurology. Structured in five sections, the book begins by explaining the term "advocacy" in general before elaborating on the areas of interest within neurology. The text goes on to offer concrete strategies and tools for clinicians to deploy advocacy in their daily work, and then discusses specific neurological diseases to point out and explain where advocacy is, or could be, beneficial. The book ends with an outlook, presentation of results, and an ending conclusion. Advocacy in Neurology offers a practical perspective on advocacy activities in neurology, aiming to show when and why they are important for neurology.
Download or read book Obstetric Anesthesia and Uncommon Disorders written by David R. Gambling and published by Cambridge University Press. This book was released on 2023-05-31 with total page 497 pages. Available in PDF, EPUB and Kindle. Book excerpt: A thoroughly revised third edition of the acclaimed textbook for caregivers involved in the management of pregnant women with uncommon diseases or an unusual or rare condition. The book offers valuable case reports and experience collated by an international team of editors and contributors who are leading experts in the field. This edition contains five additional chapters covering topics like cardiac and neuraxial point of care ultrasound, substance abuse, rare inherited conditions, and anesthesia for rare fetal and placental conditions. Clear, concise management guidelines and algorithms are provided, and each chapter is written from the viewpoint of the obstetric anesthesiologist. Numerous tables, figures and photographs provide visual aids and each chapter contains valuable clinical insights highlighting the essential facts. Featuring updated figures and references, links to useful websites for further reading and a list of commonly used abbreviations. A valuable resource for obstetric anesthetists, perinatologists and other obstetric care providers.
Download or read book Current questions and challenges in healthcare of the post socialist countries written by Yuriy Timofeyev and published by Frontiers Media SA. This book was released on 2023-09-08 with total page 109 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Healthcare Activism written by Susi Geiger and published by Oxford University Press. This book was released on 2021 with total page 262 pages. Available in PDF, EPUB and Kindle. Book excerpt: Healthcare has undergone major changes in personalization, marketization, and digitalization in recent decades. Through conceptual and empirical studies from a variety of healthcare contexts, this book explores the role of activists and civil society in defining and defending the collective good in healthcare and its changing landscape.---
Download or read book Rare Diseases in the Age of Health 2 0 written by Rajeev K. Bali and published by Springer Science & Business Media. This book was released on 2013-10-21 with total page 307 pages. Available in PDF, EPUB and Kindle. Book excerpt: This text focuses on various factors associated with orphan diseases and the influence and role of health information technologies. Orphan diseases have not been adopted by the pharmaceutical industry because they provide little financial incentive to treat or prevent it. It is estimated that 6,000-7,000 orphan diseases exist today; as medical knowledge continues to expand, this number is likely to become much greater. The book highlights the opportunities and challenges in this increasingly important area. The book explores new avenues which are opened by information technologies and Health 2.0, and highlights also economic opportunities of orphan disease medicine. The editors of this new book have international experience and competencies in the key areas of patient empowerment, healthcare and clinical knowledge management, healthcare inequalities and disparities, rare diseases and patient advocacy.
Download or read book Rare Diseases and Orphan Products written by Institute of Medicine and published by National Academies Press. This book was released on 2011-04-03 with total page 442 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rare diseases collectively affect millions of Americans of all ages, but developing drugs and medical devices to prevent, diagnose, and treat these conditions is challenging. The Institute of Medicine (IOM) recommends implementing an integrated national strategy to promote rare diseases research and product development.
Download or read book The voice of rare disease patients written by K. Franklin and published by . This book was released on 2014 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Rare Diseases written by Nicolas Sireau and published by Routledge. This book was released on 2017-09-08 with total page 237 pages. Available in PDF, EPUB and Kindle. Book excerpt: There are 7,000 rare diseases affecting 6%–8% of the global population. That's 3.5 million people in the UK alone. Yet only 200 rare diseases have approved treatments. In recent years, there has been a surge of interest from business and social entrepreneurs in the field of health – including looking at ways to treat rare disease patients better and faster. This book presents some of the latest developments in the world of rare disease entrepreneurship from a global group of experts. It examines the topic from the business angle, considering the drug development process and providing case studies of successful orphan drug enterprises. It also looks at rare diseases from the perspective of the patient, analysing the growing rare disease patient movement, a successful patient group that uses social enterprise techniques, and chapters on key requirements for helping patients with rare diseases through registries and centres of excellence. The book will be an essential toolkit for social and business entrepreneurs who are interested in the world of rare/orphan diseases. It has the rigour of an academic publication, along with the clarity of a lay publication. An original and timely book, Rare Diseases will help to add knowledge and awareness to a vastly under-published subject.
