Member webinar: What is an ideal European Reference Network? Matt Johnson, EURORDIS 10 February 2016

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1 Member webinar: What is an ideal European Reference Network? Matt Johnson, EURORDIS 10 February

2 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. 2

3 An ideal network If we are comfortable with our vision of a network then we are wrong networks are not exclusive single professional clubs, but inclusive, multidisciplinary communities Opening remark at the First EC ERN Conference, Brussels

4 Our vision of the IDEAL ERN Our expectations Increased accurate diagnosis and new viable treatments being available in the first 2-3 yrs. Increasing visible expert teams being a magnet for attracting complex cases, Improved access to timely advice, diagnosis and treatment (their needs quickly) Stay the same Patients will continue to receive care locally to where they live. Patients will see no change to care, but will have better outcomes. What is different How clinicians connect with each other and the reach of their professional network. 4

5 ERN blueprint Independent oversight body RD thematic grouped ERNs every rare disease sitting under one RD ERN. Overarching operational network Built on individual rare disease clinical networks Integration of healthcare and research Rare Cancers ERNs connect to one central Cancer Research Hub Rare Diseases ERNs linked to Undiagnosed Disease Research Network Centralisation of core functions: Information Technologies and IT Platforms Administration and supporting functions Common approaches to create interoperability Structured and formal interfaces with BBMRI, JRC, transitional research pathway, industry,. 5

6 ERN Care Model Complex and rare cases Multi-system conditions and diseases Ultra-rare and highly specialised intervention or surgery Expertise travels to the patient: Stage 1: Specialist care planning advice to local services for complex cases care delivered by local team Stage 2: Specialised case consultation at HCP care delivered by HCP Expertise travels to HCP in the ERN: Stage 3: ERN virtual case review and specialist advice to HCP care delivered by HCP Patient travels to the expert: Stage 4: HCP to HCP internal referral within the ERN to specialist HCP: For diagnostic and care planning for ultra rare diseases For highly specialized interventions or surgery 6

7 How do we achieve this 1. Well organised and coordinated network: Integrated multidisciplinary network approach Provision of medical innovation and expert opinion Patient-centred networks and collaboration with patient groups 2. Clinical services: Better access to best possible clinical services Clear and seamless continuum of care with local healthcare providers 3. Knowledge generation: Co-production of knowledge with patients and clinicians 4. Knowledge dissemination Provide information to professionals and public rare disease, natural history, treatments Capture knowledge and align care pathways 7

8 Potential services An IDEAL ERN provides: 1. Indirect coordination services 2. Direct clinical services: 1. Locally in regional and national healthcare providers 2. ERN and its HCPs members, and jointly between ERNs for multisystem diseases. 3. Knowledge generation services 4. Knowledge dissemination services 8

9 Creating clinical connectivity (1) Indirect coordination services: Network administration, coordination and governance activities via ERN Board Meetings Assurance function monitoring ongoing compliance and competency of ERN and its HCP against agreed work plan, derogation plans and legislation work Monitoring of a quality, patient safety and evaluation framework Communication and media, including website Organisational development workshop 9

10 Direct clinical services: Triage and management of patient referral review Creating quality care (2) MDT case review and with additional specific diagnostics (e.g. phenotyping, new genes, array technique) Specialist care planning advice to local / regional services for complex cases MDT treatment planning and review to initiating of appropriate treatment MDT treatment follow up / monitoring (e.g. biomarker) Internal specialist referral within the ERN to specialist HCP that provide highly specialized interventions or surgery for the ERN Second opinion internal and external Storage of clinical and genetic samples Discharge clinical review 10

11 Knowledge generation services: Creating quality outcomes (3) Clinical audit events for sharing and dissemination of knowledge, evidence and expertise and identify emerging best practice Development of clinical / best practice guidelines Development of referral pathways, cross-border patient pathways Informatics services collection and analysis of ERN s clinical outcomes Research and innovation activities and development of new specific drugs Shared registries service 11

12 Knowledge dissemination: Creating clinical excellence (4) Journals and publications library public access Teaching, training and continuous education events for ERN s HCP and externally for local, regional and national healthcare providers Information management and sharing (including pathways) Discussion and learning efourms 12

13 Challenges Identifying current funding and costings Financial reimbursement of services Building a sustainable business model more? 13

14 Year : evolution from a concept to reality. Establishing internal relationships Organisation monitoring / assurance framework and governance of the network Coordination and organisation of care referral pathways, case review, second opinion and delivery of care and treatment Basic IT platform (communication and first clinical tools) Proof of concept Year : Formalising ERN MDT working and establishing external relationships Best practice starting to emerge Extension of disease and geographical coverage Clinical IT platform (common clinical tools) Year : Agreed outcome monitoring and benchmarking Greater connection and integration of research and healthcare Year : Mature IT solutions increasing interoperability and standards Year : Preparation for EC independent evaluation in 2021/2 14

15 Thank you Daniel -Sanfilippo syndrome 15