Building European reference networks in health care: exploring concepts and national practices in the European Union

ABSTRACT

Under the European Directive on the application of patients’ rights in cross-border health care, the development of European reference networks was promoted as one of the prime areas for cross-border cooperation among Member States. These networks are meant to improve access to and provision of high-quality specialized health care to those patients who need it, and to act as focal points for medical training and research, information dissemination and evaluation, especially for rare diseases. The idea of pooling resources in this way parallels moves to concentrate specialized health care services driven by financial constraints, workforce shortages and growing attention to quality and safety. This book examines the ways in which reference networks have developed in European countries, for what kind of medical conditions or interventions, the motivations behind their establishment, the regulatory and administrative processes involved, and the financial arrangements needed. This study outlines the key policy implications and challenges of developing the concept of reference networks at national and European levels, and will assist policy-makers, health professionals, administrators and others involved in implementing the Directive.