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The Voice Of 12 000 Patients Experiences And Expectations Of Rare Disease Patients On Diagnosis And Care In Europe Book in PDF, ePub and Kindle version is available to download in english. Read online anytime anywhere directly from your device. Click on the download button below to get a free pdf file of The Voice Of 12 000 Patients Experiences And Expectations Of Rare Disease Patients On Diagnosis And Care In Europe book. This book definitely worth reading, it is an incredibly well-written.
Author : Anonim
Publisher : EURORDIS - Rare Diseases Eu
Page : 325 pages
File Size : 46,9 Mb
Release : 2009
Category : Electronic
ISBN : 9782953031812
Author : Nina Pereza,Borut Peterlin,Saša Ostojić
Publisher : Frontiers Media SA
Page : 91 pages
File Size : 43,9 Mb
Release : 2022-05-24
Category : Science
ISBN : 9782889761937
Author : Peter Wehling,Willy Viehöver,Sophia Koenen
Publisher : Routledge
Page : 309 pages
File Size : 51,5 Mb
Release : 2014-11-27
Category : Social Science
ISBN : 9781317584476
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.
Author : Volker Amelung,Viktoria Stein,Esther Suter,Nicholas Goodwin,Ellen Nolte,Ran Balicer
Publisher : Springer Nature
Page : 1212 pages
File Size : 41,9 Mb
Release : 2021-07-12
Category : Business & Economics
ISBN : 9783030692629
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.
Author : J. Mantas,L. Stoicu-Tivadar,C. Chronaki
Publisher : IOS Press
Page : 1184 pages
File Size : 47,6 Mb
Release : 2021-07
Category : Medical
ISBN : 9781643681856
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.
Author : Sabrina Cipolletta,Noa Vilchinsky,Val Morrison
Publisher : Frontiers Media SA
Page : 300 pages
File Size : 51,7 Mb
Release : 2021-02-09
Category : Science
ISBN : 9782889664658
Author : Sophie Hill
Publisher : John Wiley & Sons
Page : 244 pages
File Size : 49,6 Mb
Release : 2011-08-24
Category : Medical
ISBN : 9781444346831
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
Author : Wolfgang Grisold,Walter Struhal,Thomas Grisold
Publisher : Oxford University Press
Page : 400 pages
File Size : 40,8 Mb
Release : 2019-02-21
Category : Medical
ISBN : 9780192515575
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.
Author : Karen M. Facey,Helle Ploug Hansen,Ann N.V. Single
Publisher : Springer
Page : 434 pages
File Size : 55,7 Mb
Release : 2017-05-15
Category : Medical
ISBN : 9789811040689
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
Author : David R. Gambling,M. Joanne Douglas,Grace Lim
Publisher : Cambridge University Press
Page : 497 pages
File Size : 44,8 Mb
Release : 2023-05-31
Category : Medical
ISBN : 9781009081979
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.
Author : Yuriy Timofeyev,Maria Kaneva,Galina Skvirskaya
Publisher : Frontiers Media SA
Page : 109 pages
File Size : 53,9 Mb
Release : 2023-09-08
Category : Medical
ISBN : 9782832533529
Author : Susi Geiger
Publisher : Oxford University Press
Page : 262 pages
File Size : 53,5 Mb
Release : 2021
Category : Health & Fitness
ISBN : 9780198865223
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.---
Author : Manuel Posada de la Paz,Domenica Taruscio,Stephen C. Groft
Publisher : Springer
Page : 667 pages
File Size : 48,7 Mb
Release : 2017-12-06
Category : Medical
ISBN : 9783319671444
The fields of rare diseases research and orphan products development continue to expand with more products in research and development status. In recent years, the role of the patient advocacy groups has evolved into a research partner with the academic research community and the bio-pharmaceutical industry. Unique approaches to research and development require epidemiological data not previously available to assist in protocol study design and patient recruitment for clinical trials required by regulatory agencies prior to approval for access by patents and practicing physicians.
Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Accelerating Rare Diseases Research and Orphan Product Development
Publisher : National Academies Press
Page : 442 pages
File Size : 51,9 Mb
Release : 2011-04-03
Category : Medical
ISBN : 9780309158060
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.
Author : Helena Legido-Quigley
Publisher : World Health Organization
Page : 242 pages
File Size : 46,9 Mb
Release : 2008
Category : Medical
ISBN : 9789289071932
People have always travelled within Europe for work and leisure, although never before with the current intensity. Now, however, they are travelling for many other reasons, including the quest for key services such as health care. Whatever the reason for travelling, one question they ask is "If I fall ill, will the health care I receive be of a high standard?" This book examines, for the first time, the systems that have been put in place in all of the European Union's 27 Member States. The picture it paints is mixed. Some have well developed systems, setting standards based on the best available evidence, monitoring the care provided, and taking action where it falls short. Others need to overcome significant obstacles.