ERN State of the Art Matt Johnson, EURORDIS HealthCare Director EURORDIS Membership Meeting 2016, Edinburgh 26 May 2016 eurordis.org eurordis.org 1
European Reference Networks • ERN clinical services: drawing the blue print of care • Call for ERN applications • First ERN applications • Lessons learned • Opportunities • What is next? 30/05/2016 eurordis.org 2
ERN clinical services: drawing the blue print of care 30/05/2016 eurordis.org 3
What a European Reference Network is for us? • Highly specialised healthcare networks → meeting the needs of rare, complex diseases or conditions. – Care delivered by an ERN is always in one of the ERN’s HCPs, under the MS domestic law. – Decision making for treatment is with the treating physician, but informed by the knowledge and expertise from the ERNs. • Multidisciplinary clinical communities → with the free movement of expertise and knowledge: – with ‘local’ healthcare providers in Member States – between Healthcare Providers members in an ERN, and – jointly across several ERNs. • Culture of learning → that celebrates variation in practice and only standardised based on clear evidence of improvement. • Improving outcomes for patients → through improved access to high quality, timely and accurate diagnosis, care and treatment. 30/05/2016 eurordis.org 4
Scattered Expert Centres across EU Expert Centre Expert Centre Expert Centre Expert Centre Expert Centre Expert Centre Expert Centre Expert Centre Expect Centre Expert Expert Centre Centre 30/05/2016 eurordis.org 5
Endorsement of Expert Centres Health care Provider Health MS Endorsement care Health Provider care Endorsement Endorsement Provider Health care Provider Expert Centre endorsed as a Health Endorsement ‘Healthcare Provider’ to take part care Provider in an ERN application, by their Member State Health care Endorsement Provider Health Endorsement care Provider Health Endorsement Endorsement care Provider Endorsement Health care Health Provider care Health Provider care Provider Endorsement 30/05/2016 eurordis.org 6
The Connected Clinical Generation HCP 2 HCP 4 HCP 10 HCP 9 HCP 3 HCP 6 HCP 1 HCP 5 HCP HCP +++ Clinical services in a virtual HCP 8 environment … 7 Knowledge sharing network. 30/05/2016 eurordis.org 7
Collective knowledge and expertise A European Reference Network is more than the sum of its individual parts ! • Services will include delivery of specialist advice on diagnostic, care and treatment, for rare and complex cases. • Specialist advice will be based on ‘collective experience, knowledge and expertise’ generated in the network, which is more than the sum of its individual healthcare providers. 30/05/2016 eurordis.org 8
Method of delivery: specialist advice… Direct method of the delivery of specialist advice service: • Second opinion, virtual MDT or virtual tumour board to inform specialized care plans Indirect method of generating specialist advice service: • training, education, research and evidence generation, development of best practice, care standards, etc. … Note: Delivery of specialist care is outside the ERN either through local providers or the Healthcare Provider. 30/05/2016 eurordis.org 9
ERN services are … • Indirect coordination services • Direct clinical services – Triage patient referral – review – Specialist care planning advice to local / regional services for complex cases – MDT case review and with additional specific diagnostics (e.g. phenotyping, new genes, array technique) – Highly specialised surgery or intervention in HCP – MDT treatment planning and review to initiating of appropriate treatment – MDT follow up / monitoring (e.g. biomarker) – Discharge clinical review • Knowledge generation and dissemination – Clinical audit events for sharing and dissemination of knowledge, evidence and expertise and identify emerging best practice – Development of clinical / best practice guidelines, referral pathways – Teaching , training and continuous education events for ERN’s HCP and externally for local, regional and national healthcare providers – Discussion and learning through eForums * Additional tests and treatments provided in HCP not ERN 30/05/2016 eurordis.org 10
Our right to care Access to a specialist procedures under an ERN will depend: • Patient rights within their Member State • Available treatments included in the national ‘basket of treatments’ • Subject to prior approval in your Member State Patient right to care remain the same! → Patient rights under the Social Security Regulation or Cross-border Healthcare Director do not change 30/05/2016 eurordis.org 11
Call for ERN applications 30/05/2016 eurordis.org 12
Getting ready for 1 st Call European Commission • EC Projects: – Development of the ERN Assessment Manual & Toolbox – Appointment of the Independent Assessment Bodies – Development of IT infrastructure • ERN Call: – First wave: First call for ERN Applications with funding grants launched 16 March – 21 June – Funding grants available - €2,500,000 per year, for the next five years – Second wave: ERN Applications without funding grants in June 2016. Member States – Development of national ‘endorsement’ process for Healthcare Providers to take part in an ERN application – Set strategic direction – Thematic group RD applications only & ONE application per thematic group – Identifying Collaborative and National Associated Centres and National Hubs 30/05/2016 eurordis.org 13
Getting ready for 1 st Call Clinical Community (supported by RD Action) • Addendum to EUCERD Recommendation: • Thematic Groups for RD ERNs • Patients involved in opinion and decision making process in a RD ERN • Matchmaking initiative • Connect clinical community under same rare disease grouping • Ensure visibility of potential applications and avoid fragmentation • Visibility of scope and level of maturity of applications • Not a true picture but an indication of potential applications • Visible to the BoMS to inform strategic prioritization 30/05/2016 eurordis.org 14
Avoiding fragmentation & overlap applications Rare immunological and auto-inflammatory Rare craniofacial anomalies and ENT (ear, nose diseases and throat) disorders Rare bone diseases Rare Hepatic diseases Rare cancers* and tumours Rare hereditary metabolic disorders Rare cardiac diseases Rare multi-systemic vascular diseases Rare connective tissue and musculoskeletal Rare neurological diseases diseases Rare malformations and developmental Rare neuromuscular diseases anomalies and rare intellectual disabilities Rare endocrine diseases Rare pulmonary diseases Rare eye diseases Rare renal diseases Rare gastronintestinal diseases Rare skin disorders Rare gynaecological and obstetric diseases Rare urogential diseases Rare haematological diseases Source: http://ec.europa.eu/health/rare_diseases/docs/20150610_erns_eucerdaddendum_en.pdf eurordis.org 15
First ERN applications 30/05/2016 eurordis.org 16
Coordinators of applications 30/05/2016 eurordis.org 17
Principle for application Key principles • Every rare disease has a home under an ERN – no rare diseases are not included in an application’s scope! • Universal coverage of ERN across ALL Member State – either with a Healthcare Provider Member(s) or Affiliated Centre(s) • Patients and patient representatives play an integral role in the governance and decision making of rare disease ERN • Embedding strong patient empowerment at the heart of ERNs , the development of ERNs should be strongly shaped by the needs and experiences of patients. • Leveling up expertise across the EU , ERNs have a clear and proactive dissemination and training strategy to ensure that learning and expertise created in the ERN is disseminated across ALL Member States • There needs to be a balance of clinical variably of networks that does not erode the strategic equality of every patient, with a rare disease and cancer, should have a home under an ERN. 30/05/2016 eurordis.org 18
First ERN applications http://www.rd-action.eu/?s=MATCH+MAKER 30/05/2016 eurordis.org 19
Thematic Grouping Coordinating HCP Name of Coordinator Rare Bone Diseases (BOND) Istituto Ortopedico Rizzoli , ITALY Luca Sangiorgi St. Anna Kinderkrebsforschung e.V. – Rare Cancers and Tumours (Paediatric) Ruth Ladenstein AUSTRIA General Cancer Centre Léon Bérard – Rare Cancers and Tumours (Adult) Jean-Yves Blay FRANCE Academic Medical Centre - THE Rare Cardiac Diseases (GUARD-HEART) Arthur Wilde NETHERLANDS Rheumatology Unit, Azienda Rare Connective Tissue and Ospedaliero Universitaria Pisana- Marta Mosca Musculoskeletal Diseases (ReCONNET) ITALY Rare Craniofacial and ENT TBC Leiden University Medical Centre – Rare Endocrine Diseases (ENDO-ERN) Alberto Pereira THE NETHERLANDS Hôpitaux Universitaires de Rare Eye Diseases (ERN-EYE) Hélène Dollfus Strasbourg – FRANCE Rare Gastrointestinal Diseases (ERN- Erasmus Medical Centre, Rotterdam Rene Wijnen CAM) – THE NETHERLANDS Rare Gynaecological & Obstetric Diseases TBC Rare Haematological Diseases Joan-Lluis Vives Hospital Clinic of Barcelona – SPAIN (eurobloodnET) Corrons 30/05/2016 eurordis.org 20
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