Public consultation on the implementation of European Reference Networks (ERN) under the framework of Article 12 of Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients' rights in cross-border healthcare.
Background
The Directive on the application of patients' rights in cross-border healthcare (Directive 2011/24/EU) requires the European Commission to support Member States in the development of European Reference Networks between healthcare providers and centres of expertise.
The main added value of the European Reference Networks and of the Centres of Excellence is to facilitate improvements in access to diagnosis and delivery of high-quality, accessible and cost-effective healthcare in the case of patients who have a medical condition requiring a particular concentration of expertise or resources, particularly in medical domains where expertise is rare (see Recital 54 of the Directive). European Reference Networks could also be focal points for medical training and research, information dissemination and evaluation, especially for rare diseases.
Article 12 requires the Commission to adopt a list of criteria that the networks must fulfil, and the conditions and criteria which providers wishing to join networks must fulfil. The Commission is also required to develop and publish criteria for establishing and evaluating European Reference Networks. And it must facilitate the exchange of information and expertise on the establishment of the networks and of their evaluation.
Public Consultation
DG Health & Consumers launched a public consultation targeted to stakeholders on the implementation of European Reference Networks (ERN) and in particular on the criteria to be considered according to Article 12 of the Directive 2011/24/EU.
A conceptual paper and a questionnaire have been prepared by Directorate General Health & Consumers.
Target groups:
- Patient organizations, health professionals' organizations and healthcare provider's organizations.
- Healthcare providers and centres of excellence, academic and public health and healthcare specialized institutions.
- Public authorities and government-appointed bodies responsible or involved in the definition of criteria and the establishment and evaluation of centres of reference/excellence and reference networks of centres providing highly specialized healthcare
The consultation has been launched the 23rd of November 2012 and closed the 22nd of February 2013.
The objective of the public consultation was to consult stakeholders to receive input of interested parties as to how the criteria for the scope and for European Reference Networks and the healthcare providers wishing to join the network could be addressed and facilitated.
Results of consultation and next steps
A summary and all contributions received from stakeholders regarding the above mentioned public consultation can be found below:
List of all contributors to the public consultation (Total: 138 contributions)
Individual reports:
- Attikon hospital, Greece
- BG Trauma Hospital Hamburg, Germany
- The Centre for Disease Prevention and Control, Latvia
- Centre de référence des infections ostéo-articulaires complexes pour l'inter-région nord-ouest, France
- Children´s Heart Center, Skane University Hospital, Lund, Sweden
- Clinica Pediatrica Università degli Studi dell'Insubria - Ospedale di Circolo Fondazione Macchi - Varese, Italy
- Red cell pathology unit, hospital clinic-university of Barcelona, Spain
- Coordinating Centre for Rare Pediatric Diseases, Lithuania
- Regional Coordinator Centre for Rare Diseases of the Friuli Venezia Giulia Region-Italy (RCCRD), University Hospital of Udine, Italy
- Department of Clinical Sciences - Lund University, Malmö, Sweden
- DNV Business Assurance, Norway
- European network pf paediatric research at the European Medicines Agency (Enpr-EMA), UK
- Erasmus MC, Center for lysosomal and metabolic diseases, Netherlands
- European Union of Medical Specialists, Belgium
- Fondation René Touraine: an international Foundation for Dermatology, France
- Neuromuscular Disorders Clinic, Neurology Department, Hospital General Universitari Vall d'Hebron, Spain
- Institute of Child Health, Greece
- IRCCS - Istituto Ortopedico Rizzoli - Department of Medical Genetics and Rare Orthopaedic Diseases, Italy
- Istituto Ortopedico Rizoli, Italy
- La Fe, Spain
- German Mesothelioma Register, Germany
- Croatian National Institute of Public Health, Croatia
- National Center for Tumor Diseases (NCT) Heidelberg, Germany
- Clinical Neurosciences Department, Neurology Unit, Italy
- North of England EU Health Partnership, UK
- Riga East University hospital stationary “Infectology Center of Latvia” (RAKUS LIC), Latvia
- French Reference Center for Rare Iron Overload Diseases of Genetic Origin, France
- Scientific Institute Public Health, Belgium
- Slovak Radiological Society, Slovakia
- SWEET e.V., Germany
- University and Hospital of Health Sciences, Neuroscience Institute, Lithuania
- University Medical Center Hamburg-Eppendorf, Germany
- University of Glasgow, UK
Health professionals’ organisations (29 contributions)
- Slovenian Association of Radiology, Slovenia
- Association of Speech Language Pathologists, Malta
- Malta Association of Physiotherapists, Malta
- Lithuanian Child Neurology Association, Lithuania
- The Standing Committee of European Doctors (CPME), Belgium
- Centres de Référence des Infections Ostéoarticulaires Graves et Complexes (CRIOA), France
- Centres de Référence des Infections Ostéoarticulaires Graves et Complexes (CRIOA), France
- Pediatric Orthopaedic Unit. National Reference Unit. CSUR. University of Murcia, Spain
- European Board of Urology, EBU (Urology section of the UEMS), Netherlands
- European Region of the World Confederation for Physical Therapy (ER-WCPT), Belgium
- EuroDSD Consortium, Germany
- European Federation of Nurses Associations, Belgium
- The European Glaucoma Society, Belgium
- European Society of Cardiology, France
- European Society for Medical Oncology, France
- FMA, Finland
- Hospital Carlos Haya Malaga, Spain
- Servicio de neurocirurgía pediátrica, hospital universitario 12 de octubre, Spain
- Hospital Universitario Fundación Alcorcón, Spain
- Hellenic society for the study of inborn errors of metabolism, Greece
- INCCI (National Heart Institute), Luxembourg
- IVAA International Federation of Anthroposophic Medical Associations, Belgium
- Ordem dos Enfermeiros, Portugal
- Polish Nurses Association, Poland
- Paediatric Rheumatology International Trials Organisation (PRINTO), Italy
- Radboud University Nijmegen Medical Centre, department of Neurology, Netherlands
- Lithuanian Society for Paediatric Gastroenterology and Nutrition, Lithuania
- Lithuanian society of pediatric oncology and hematology, Lithuania
- UEMS, Section/ European Board and College of Obstetrics and Gynaecology, Belgium
Patient organisation/association (26 contributions)
- Asociacion de pacientes de Hemocromatosis (AEH) - Spanish Hemochromatosis Patient Association, Spain
- APDP - Associação Protectora dos Diabéticos, Portugal
- Associação Portuguesa de Hemocromatose, Portugal
- Lithuanian association of people with genetic neuromuscular diseases "Sraunija", Lithuania
- Udruga osoba i roditelja djece sa spinom bifidom "Aurora", Croatia
- Azzurra Associazione Malattie Rare Onlus, Italy
- Brittle Bone Society, UK
- Cystic Fibrosis Europe (CFE), Germany
- DEBRA International, Austria
- EFAPH – European Federation of Associations of Patients with Haemochromatosis, France
- EFAPH - European Federation of Associations of Patients with Haemochromatosis, France
- The ESPKU -The European Society for Phenylketonuria and allied disorders, Belgium
- EURORDIS – The European Organisation for Rare Diseases, France
- Cyprus Federation of Associations of Patients and Friends, Cyprus
- Malta Health Network, Malta
- International Federation for Spina Bifida and Hydrocephalus (IF), Belgium
- International Federation for Spina Bifida and Hydrocephalus, Belgium
- International Patient Organisation for Primary Immunodeficiencies (IPOPI), UK
- KRIKOS ZOIS Greek Society for Patients and Friends of Patients with Inherited Metabolic Diseases, Greece
- MITOCON insieme per lo studio e la cura delle malattie mitocondriali ONLUS, Italy
- PHA EUROPE - European Pulmonary Hypertension Association, Austria
- Rare Disorders, Denmark
- SHINE- Spina Bifida Hydrocephalus Information Networking Equality, UK
- Madrid Spina Bífida Association (Asociación Madrileña de Espina Bífida), Spain
- Tree of hope, Germany
- VSH vzw, Belgium
Healthcare provider (23 contributions)
- Association of clinics of the German Social Accident Insurance, KUV, Germany
- AZ Vesalius, Belgium
- Kath. Kinderkrankenhaus Wilhelmstift gGmbH, Germany
- Department of Clinical Genetics, University and Regional Laboratories, Region Skane, Lund, Sweden
- Department of Pathology, University and Regional Laboratories, Region Skåne, Sweden
- Department of Medical Genetics, Medical School, University of Athens, Greece
- Division of Inherited Metabolic Diseases, Centre for Childhood and Adolescent Medicine, University Hospital Heidelberg, Germany
- North German Epilepsy Center Hamburg, Germany
- Hemochromatosis Clinic at Santo António Hospital, Portugal
- Hospital Universitario de Getafe (Getafe Universitary Hospital), Spain
- Openbaar Psychiatrisch Zorgcentrum Rekem, Belgium
- Department of Medical Biochemistry, Oslo University Hospital, Rikshospitalet, Oslo, Norway
- Department of Paediatric Neurology, Pendeli Children's Hospital, Athens, Greece
- Phakomatoses Centre, Hospital of the Lithuanian University of Health Sciences Kauno klinikos, Lithuania
- Rehabilitation and MS-Centre Overpelt, Belgium
- Riga Centre of Psychiatry and Addiction Medicine, Latvia
- SB SOFT, Italy
- Scandinavian Ear Reconstruction Centre, Dept of Plastic and Reconstructive Surgery, Sweden
- Schoen Kliniken group, Schoen Klinik Hamburg Eilbek, Dept. of neurology and neurorehabilitation, Germany
- Multidisciplinary Endocrine Tumor Team, Skåne University Hospital, Lund, Sweden
- vzw Jessa Ziekenhuis, Belgium
- Groupe MGEN - Mutuelle Générale de l'Education Nationale, France
- Hospital General Universitario Gregorio Marañón, Spain
Healthcare provider organisations (7 contributions)
- Central Manchester University Hospitals NHS Foundation Trust, UK
- European Chiropractors' Union (ECU), UK
- HospiLim, Belgium
- Royal Free london NHS Foundation Trust, UK
- Unit for Patient Safety Capital Region of Denmark, Denmark
- Verband der Privatkrankenanstalten Österreichs, Austria
- Zorgnet Vlaanderen and ICURO, Belgium
Public authorities and government-appointed bodies (13 contributions)
- Ministère des Affaires Sociales et de la Santé, France
- Ministry for Health, the Elderly and Community Care, Malta
- The Norwegian Ministry of Health and Care Services, Norway
- Directorate-General of Health / Ministry of Health, Portugal
- Veneto Region Coordinating Centre for Rare Diseases (VRCCRD), Italy
- VSOP, Lupus Netherlands
- Entidade Reguladora da Saúde – ERS (Portuguese Health Regulatory Authority), Portugal
- Italian Technical Board of Regions for Rare Diseases, Italy
- Fundacion Rioja Salud, Spain
- Health Department, Campania Region, Italy
- Castilla y leon Regional Health Service (Gerencia Regional de Salud de Castilla y León), Spain
- Kassenärztliche Vereinigung Hamburg, KVH, Germany
- Stowarzyszenie Chorych z Przepukliną Oponowo - Rdzeniową RP in Katowice, Poland
Health insurer (2 contributions)
- German Social Accident Insurance, DGUV, Germany
- Landsbond van Onafhankelijke Ziekenfondsen - Union Nationale des Mutualités Libres, Belgium
Individual respondents (5 contributions)
- Applus-novotec, Spain
- Assistance Publique Hôpitaux de Paris - Unité de Génétique des Maladies Cardiaques et Musculaires, France
- Individual respondent-Dr mayka sanchez, Spain
- Foundation for Christianity, Hungary
- Foundation for Christianity, Hungary
Contact details
Responsible service:
European Commission
Directorate General Health & Consumers
Unit D2 – Healthcare Systems
E-mail: SANCO-ERN-PUBLIC-CONSULTATIONec [dot] europa [dot] eu (SANCO-ERN-PUBLIC-CONSULTATION[at]ec[dot]europa[dot]eu)