ERN-INTEGRATION NATIONAL

WORKSHOP

MATT BOLZ-JOHNSON AND INES HERNANDO

8 NOVEMBER 2019

Integration of ERNs into national health systems

epiCARE

ConsultationReferralSeek advise

• Provide virtual advise• Clinical Guidelines• Research• Generation of

knowledge/sharing• Training• Registries

Treatment/Diagnosis

Pediatric hospital Bambino Gesù, Rome Full ERN Member

National healthcare provider

PatientsNational/Regional expert center

Seek advise

• Provide advise• Share knowledge,

Guidelines• Training…

Coordination at national level on ERNs is a must

« To facilitate coordination on all aspects linked to ERNs, we call on MS to set up a national ERN coordination group composed by all relevant

stakeholders including, ePAG patient advocates, RD National Alliances, clinicians, researchers, hospital managers, and health and social care

policy makers at national and regional level. »

EURORDIS Recommendations on Integration of ERNs into National Health Systems

Recommendations under Five Key Areas of Intervention

1. National rare disease plans / strategies and legal framework for ERN integration

2. Patient care pathways

3. Referral systems to the ERNs

4. Information on ERNs provided at MS level

5. Support by Member States (MSs) to ERN Coordinators, Full Members and Affiliated Partners

5

Let’s focus on our shared goal

We all share the same goal, improving the quality of care of people living with RD and their

health outcomes.

No one organisation/stakeholder can address the challenges alone and deliver.

Each country will need to develop a joint shared strategy for the effective integration of ERNs

into their national health system.

Call for Expressions of Interest

Call for Expressions of Interest for the Organisation of ERN-integration National Workshop

Rare Disease National Alliances & Patient Organisations have a critical role to leverage the opportunities ERNs offer for their local communities &

promoting integration of ERNs into national healthcare systems.

• Continue the conversation at a National level, building on the publication of the Statement of the ERN Board of Member States on Integration of the European Reference Networks to the healthcare systems of Member States.

• This Call for Expression of Interest is aims at supporting National Alliances to lead and collaborate with local stakeholders on building the ERNs from a ”bottom-up” approach.

• Eligibility: Open to National Alliances from EU Member State

• Please show your interest to Ines & Matt

ERN-integration National Workshop Aims

• Raise awareness of ERNs and their activities

• Place patients at the heart of the discussions on policies and organisation of services

• Involve all relevant stakeholders to maximise exchanges on those policies

• Secure political ownership and support (resources, finances and administrative)

• Foster the effective implementation of ERN activities within each country and leverage benefits of networking

• Map and align national services with ERN functions and explore changing roles of HCP Members within NHS.

• Assess, adapt and update rare disease plans/strategies and legislation to enable smooth integration of ERNs into national systems.

Multi-stakeholder Workshop

Best Practice Toolkit

Integrate ERNs into

NHS

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• Voice of patient community in ERNs

• Bridge to the RD Community

• Active in ERN

• Development of guidelines

• Provide advice on CPMS

• Research, etc …

• Approval of ERNs & HCP Applications

• Strategic development

• Endorsement of HCP Applications

• Support HCPs activities in ERNs

• Bridge to the RD Community

• Raise awareness of ERNs

• Sharing of information

• National coordination role

• Dissemination of ERN knowledge, information and activities

• Referral of patients into ERNs

• Development of legislation

• Support hospitals to participate in ERNs

• Coordination integration of ERNs into NHSs

• Organisation of referral pathways into ERN

• Model of care for RD

• Development of National Networks

• Assessment and adoption of ERN guidelines

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• Support clinician’s activities in ERN

• Data collection

• Provide infrastructure

• Support adoption of ERN products - guidelines and pathways - within the hospital

• Data monitoring and infrastructure

Continuing the Conversation at a National Level

• HCP Members: ”boundary role” needed to be active both within an ERN and locally within their respective national systems.

• New role / function of National Coordinators

Workshop Blue-Print

S1. Patient Care Pathways

Approach:

• One-day ‘’ERN-integration national workshop” in order to make tangible steps to to implement ERNs within each Member State

• Provide a platform for multi-stakeholder discussion, tailored to meet national needs and provide an opportunity to exchange ideas and good practice

• Patient-led (organised by National Alliances), EURORDIS-support

• Map National referral pathway into an ERN to ensure timely access to advise and adequate case management

• Review of ERN pathways (example) and how they can be implemented nationally, assessing impact on care coordination (top-down)

• Service mapping and their alignment with the new Network Care Pathways (bottom-up)

S.2 Referral Systems to ERNs S3. Information on ERNs S4. Support of Member States

• Roundtable discussion between all stakeholders.

• Forum to scope the support (financial, resources, administrative) needed and opportunities for greater collaboration and integration both at a national and EU level.

• To identify hospital resources and infrastructure that can support the HCP Members be active in the networks

• Organisation of national system - development of National Networks under disease groups

• Identification of referral management and coordination function

• Mapping exercise: referral pathway and actions needed to re-align referral systems

• Identify country specific needs = to define ‘how ERNs can support and compliment the NHS’

• Raise awareness of ERN and leverage the benefits of networking

• Support communication and collaboration between different stakeholders

• Dissemination of new information and knowledge

• Identify legal and policy developments resulting in new knowledge and network findings

• Recognise and adopt at ERN clinical guidelines

Cross-cutting: National rare disease plans/strategies and legal framework for ERN integration:

• Assess national rare disease plans/strategies and identify needs for adaption relating to integration of ERNs into national systems.

• Discussion on the need and process for identification and accreditation of national Centres of Expertise

• Streamline the endorsement procedures for healthcare providers that apply for full membership

• Prioritising and managing the enlargement of ERNs at a National level.

• Identification any legal aspects relating to the other ‘key areas of intervention’ - care pathways, referral system, information sharing, support HCP Members.

ERN Integration Toolkit

National RD Plan & Legislation

• EU MS RD Plans

• Accreditation and endorsement processes

Patient care pathway

• Mapping of national services and resources

• Showcasing ERN pathways and guidelines

Referral systems to the ERNs

• National network approaches

• Mapping methodology for referral pathways

• National Coordination Hub model

Information on ERNs

• Showcase ERN outputs and new knowledge

• Guidelines and consensus statements

Support by Member States

• Platform to continue conversation about HCP Members needs

Toolkit is structured in two parts:

• Methodologies and evidence-base approaches for the five key areas of intervention (below)

• Share best practices and experiences from different countries

For Discussion & Next Steps

Next Steps

Maximum of 10 workshops

Co-produce workshop methodology with National Alliances, specifically:

1. Engage with National Alliance to identify areas of best practice

2. Engage with ERNs & ePAGs to showcase ERN achievements to date

3. Identify the specific needs of the first countries to support

4. Identify and schedule workshops throughout 2020

Thank You

3. HCP Member Applicant & Assessment Process

Overview of the Process

• National Endorsement - HSE Acute Operations (one applicant per ERN)

• Ten-Stage Process in minimum 12 months Timeline

• Tools: Assessment Manual (Desciption & Procedures); Technical Toolbox andOperational Criteria for HCP Applicants

Source: EC ERN Assessment Manual for Applicants – Technical Toolbox (2019)

•Publication Call for Interest

Stage 2

•Application for joining a Network

Stage 3

•Assessment Process for Applicant

Stage 4

•Determine Eligibility

Stage 5

•Technical Assessment

Stage 6

•Transfer of to the EC

Stage 7

•BoMSApproval

Stage 8