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The Slow Lane
Avoid the speed trap! Discover how changemakers can find lasting solutions to urgent social problems through a proven 5-step process for listening thoughtfully, building broad support, and exploring unconventional options. Society celebrates leaders who promise fast, easy solutions to the world's problems—but quick fixes are just mirages that fade, leaving us with the same broken systems. The truth is, effective social change happens through slow, intentional actions. The author, a globally acclaimed social entrepreneur, offers a 5-step process for taking the slow lane to change-the lane that gets you to the right place faster: Listening—Listen to build trust, which can change hearts and...
Patient engagement in healthcare: a preliminary set of measures to evaluate patient engagement in the European Reference Networks
Aim: The European Reference Networks (ERNs) provide clinicians and patients the opportunity to collaborate at EU level to improve diagnosis, care and treatment for people living with rare and complex conditions. However, building a partnership culture to systematically involve patients in ERN activities and decision-making structures is challenging, partly because the role of patient representatives and the value of this collaboration are not always understood. The objective of this project was to develop an evaluation framework to assess the impact of patient engagement in the ERNs and to provide evidence on the value of patient-clinician partnership. Methods: The evaluation was developed b...
Handbook Integrated Care
This handbook gives profound insight into the main ideas and concepts of integrated care. It offers a managed care perspective with a focus on patient orientation, efficiency, and quality by applying widely recognized management approaches to the field of health care. The handbook also provides international best practices and shows how integrated care does work throughout various health systems. The delivery of health and social care is characterised by fragmentation and complexity in most health systems throughout the world. Therefore, much of the recent international discussion in the field 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 it 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.
Chronic Illness, Spirituality, and Healing
Fusing the disciplines of health care, spiritual care, and social services, this book examines the relationship between chronic illness and spirituality. Contributors include professionals working in traditional, holistic and integrative clinical settings, as well as religious studies scholars and spiritual practitioners.
Management of Prader-Willi Syndrome
Management of Prader-Willi Syndrome brings together the contributions of professionals with considerable expertise in diagnosis and management of PWS. Clinical, social, family, and community issues are explored and management strategies identified. The text presents historical, medical, and genetic information to orient the reader. The major portion deals with pragmatic guidelines, rather than research and diagnosis, and is directed to health and educational specialists in academic, clinical, and community settings. This manual is endorsed by The Prader-Willi Syndrome Association, which is recognized world-wide.
Rare Diseases Epidemiology: Update and Overview
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.
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