INNOVCare Project, Raquel Castro

eurordis.orgeurordis.org

Raquel Castro, Social Policy Senior Manager

INNOVCare ProjectInnovation in social care provision to rare and

complex diseases

106/06/2016 EURORDIS Membership Meeting 2016 Edinburgh

eurordis.orgeurordis.org06/06/2016

The dilemma

2

Health

Social

Local

People Living with a Rare Disease and their Family

?

EURORDIS Membership Meeting 2016 Edinburgh

eurordis.orgeurordis.org06/06/2016

INNOVCare

Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions

3EURORDIS Membership Meeting 2016 Edinburgh

eurordis.orgeurordis.org 4

INNOVCare - Background

EurordisCare Survey (2002-2008)

RAPSODY - Rare Disease Solidarity Project (2006-2008)

EUCERD Joint Action WP6 - Specialised Social Services and Integration of

RDs into Social Policies (2012-2015)

National Plans & EUROPLAN Conferences - good practices (2012-2015)

Commission Expert Group Recommendations to Support the Incorporation

of Rare Diseases into Social Services and Social Policies (2016)

• Mapping social services for RDs in Europe

• Preparing case studies and good practices

• Developing of definition for resource centres for RDs – “one stop shop”

services and starting to collect information on case management and

integrated care

• Identifying main issues and hurdles regarding social care for RDs



• Call for proposals from EC-DG Employment (2014)

• Call “social policy innovation supporting reforms

in social services” - specific focus on “one stop

shop services” and “case handlers”

• Not specific to health/disability – open to all vulnerable

populations

• Over 200 projects submitted

• 7 selected – led by public bodies in Spain (3), Italy (2),

Netherlands (1) and Latvia (1)

• INNOVCare is the only project on health/disability and

with European scope

INNOVCare - Call for proposals



• Innovative patient-centred approach for social care

provision to complex conditions

• Time frame:

36 months

01/10/2015 to 30/09/2018

• Consortium:

8 partners

6 countries – Spain, France, Slovenia, Romania, Austria,

Sweden

INNOVCare - Overview



INNOVCare - Structure & partners


WP1 Coordination (MSSSI, Finovatis)WP2 Evaluation (IER)

WP3 Communication & Dissemination (EURORDIS)

MSSSI Ministry of Health and Social Affairs – Spain (Coordinator)

Finovatis – France

IER Inštitut za Ekonomska Raziskovanja – Slovenia

EURORDIS – France

APWR RPWA Asociatia Prader Willi din Romania (NoRo Resource Centre) – Romania

CJSJ Regional County Sălaj – Romania

ZSI Zentrum für Soziale Innovation – Austria

KI Karolinska Institutet – Sweden

State of the Art Social

Care Provision

for RD patients

EURORDIS

WP4European Network Resource

Centres for RDs

EURORDIS

WP5 Pilot of integrated

& personalised social care

provision

APWR RPWACJSJ

WP6

Evaluation of the pilot

ZSI

WP7Evaluation

of economic impact of innovative

partnership

KI

WP8Social Policy innovation

based reforms

ZSI

WP9


European Network of Resource Centres

Centres of Expertise


Patient Organisation

Service providers at local level (employment, school, taxes,

pensions, transport, leisure, etc.)

Case Manager

Resource Centres

88

Social Impact

Economic Impact & cost-

benefit

INNOVCare - Concept

Good practices

Key contacts for advocacy


Roadmaps to up-scale model

Patients’ & families’ needs

Care pathways in MS

European Reference Networks

Pilot implementation

• NoRo Resource Centre for Rare Diseases

• Romania, 2017


• Assessment social unmet needs of people with a RD and their family

• Analysis of existing social care models in MS

• Exchange of expertise/good practices between national one-stop-shop

services (resource centres)

• Proposition of a model of optimised patient social care pathway,

integrating the national one-stop-shop service with regional case managers:

Implementation and evaluation of a pilot (Romania)

Assessment of the social, economic impact & cost-benefit of the care

model

Analysis of scaling opportunities - beyond RDs (to other diseases,

disabilities) and to other MS

• Strengthening partnerships between public, private and civil society

organisations providing social services to RD patients/families

INNOVCare - Objectives



INNOVCare – EURORDIS role









Case Manager

Resource Centres


Social Impact


benefit

Good practices


Care pathways in MS


Pilot implementation

• NoRo Resource Centre for Rare Diseases

• Romania, 2017


• Leader Communication (WP3); State of the Art of Social Care

Provision and Patients/Families’ needs (WP4 ); European Network of

Resource Centres for Rare Diseases (WP5)

• Collect data on patients’/families’ needs (via Rare Barometer) and on

care pathways in MS

• Facilitate the establishment of the network of resource centres and

the collection of good practices via network meetings

• Represent people living with a rare disease in coordination with our

members

• Keep coherency between work packages

• Connect stakeholders

• Ensure the two way communication between INNOVCare and the

rare disease community and advocacy actions

INNOVCare – EURORDIS’ role



Impact of rare diseases on daily life, social care

burden measurement

3000 patients (adults) and family members

Identification & dimension of needs

Questionnaire is out early June

Ask your contacts to register here:

http://www.eurordis.org/voices

Study of care pathways in MS

Selection of countries

Listing services, mapping care pathway and

collecting good practices

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State of the Art – Provision of social care

to people living with a rare diseaseTime frame: Oct 2015-Nov 2016

Study on patients/families’ needs via Rare Barometer

Comparative analysis (Oct-Nov 2016): identify gaps between

patients’/families’ needs and the current care pathways

EURORDIS Membership Meeting 2016 Edinburgh


Study of care pathways in Member States

Selection of 8 countries


Methodology: Literature review and on-site visits to national authorities responsible for the providing care and support to people living with rare diseases

National Alliances have provided their input on the relevant contacts to interview Country visits are ongoing until June

State of the Art – Provision of social care

to people living with a rare disease

Diversity Policy Feasibility Type of welfare states

Size of the country

Size of the population

Type of public administration

GDP per Capita

Geographic representation across the EU

National plan for rare diseases (RD)

Reference to social issues in national plan for RD and in RD national multi-stakeholder conference

Resource centres for RD

Pilot for case management

Country of INNOVCare partners

Existence of National Alliances of RD patient organisations

Involvement in similar EU projects

Austria France Hungary Luxembourg

These countries will also be used for the economic impact/cost benefit evaluation & involved in the up-scaling

Romania Spain Sweden United Kingdom

Selection criteria:


At NoRo Resource Centre in Romania

• Pilot Reference Center for Rare Diseases - NoRo

• Established in June 2011 by Romanian Prader Willi Association

• Accredited & authorized to provide social services, medical services, training and research

• Multidisciplinary team, 17 professionals


Current Beneficiaries• People with rare diseases (local & national);• People with complex disabilities (undiagnosed patients);• Families• Professionals involved in diagnose/management

Current Activities• Day Care Service & Therapies• Residential center for respite services• Help Line• Trainings for patients and professionals

INNOVCare’s Pilot


At NoRo Resource Centre in Romania

• Time frame: 18 months, starting from 01/2017 to 06/2018

• Target population:

• Patients with complex conditions (children and adults) and their families;

• Both current beneficiaries of NoRo and new ones;

• Total of 120 beneficiaries (60 current beneficiaries ones and 60 new ones)

• The number of people benefiting from the service is higher than the number of “cases” as one case includes patient and his/her family

• Geographical scope of action: region of Salaj, Romania

• Number of case managers employed: 2

• Maximum nr. of simultaneous “cases” per case manager: 30

• Service provision should be focused on a few key areas in order to have more meaningful results. Discussions to help shape the service provision:

With social services, patient representatives and relevant stakeholders to best define service provision (8-9 September 2016);

With policy makers (22-23 September 2016)


INNOVCare’s Pilot


• Creation of the Network of Resource Centres for rare diseases (2016): membership, governance structure

Steering group: Anders Olauson (Agrenska), Dorica Dan (NoRo), Lisen Julie Mohr(Frambu)

• Elaboration of good practices via meetings of the network, other relevant service providers (i.e. case managers) and patient representatives:

Goteborg, 8-9 September at Agrenska

Cluj-Napoca/Zalau, May 2017, NoRo

Oslo, April 2018, at Frambu

• Input to shaping of the pilot in Romania and recommendations (1st meeting) to the pilot all throughout the project

• Analysis of the synergy opportunities between Resource Centres, case managers, and the European Network of Help Lines for Rare Diseases (2nd meeting)

• Network sustainability plan to be developed: analysis of the Network's resource' needs and of sustainable funding

European Network of Resource Centres for

Rare Diseases



European Network of Resource Centres for

Rare Diseases


Country Organisation

Austria EB House Austria

Croatia Debra Centre

Cyprus ANEMONI - Day care center of spastic and handicapped children

Cyprus Cyprus Institute of Neurology & Genetics

Estonia Eesti Agrenska Fond

FinlandResource Centre - Finnish Association of People with Physical Disabilities (FPD)

Finland Finnish Federation of Hard of Hearing (FFHOH)

FranceCentre national de ressources handicaps rares - Épilepsies sévères

FrancePRIOR-RH Regional Centrefor People Living with Rare Diseases

FranceV.A.D.L.R. Vivre avec une Anomalie du Développement en Languedoc Roussillon

France Centre National de Ressources Handicap Rare La Pépinière

France Centre National de Ressources Handicaps Rares Surdicécité

Italy Azzurra Associazione Malattie Rare Onlus

LuxembourgEen Häerz fir kriibskrank Kanner - A Heart for Cancer sick Children

Luxembourg ALAN asbl (Maladies Rares Luxembourg)

Norway Frambu

Norway Norwegian Porphyria Centre – NAPOS

NorwayTRS National Resource Centre for Rare Disorders – Sunnaas Rehabilitation Hospital

NorwayTAKO-centre (Norwegian National Resource Centre for Oral Health in rare Diagnosis)

Norway National Neuromuscular Centre, Norway (NMK)

Norway Centre for Rare Disorders - Rikshospitalet

Portugal Raríssimas - Casa dos Marcos

PortugalCentro de Atividades da Associação Atlântica de Apoio ao Doente de Machado-Josep

Romania Centrul Pilot de Referință pentru Boli Rare – NoRo

Romania Asociatia Casa Faenza

Spain CREER

Spain Miquel Valls Foundation

Sweden Agrenka - National Competence Centre for Rare Diseases

UK Newlife Foundation for Disabled Children

UK Camp Simcha

Potential members – services mapped during EUCERD Joint-Action

eurordis.orgeurordis.org 1806/06/2016 EURORDIS Membership Meeting 2016 Edinburgh

INNOVCare’s Advisory Group

Composition of the Advisory Group

• Representatives of competent authorities from across Europe (e.g. Ministries of Social Affairs / Health,regions).

• Limited places (20), selection on 1st come, 1st served basis & ensuring diversity of countries/profiles

Objectives of the Advisory Group

• Follow-up on the project• Provide advice to the pilot• Be involved in upscaling of the care pathway to other countries beyond Romania

Advisory Group is attending 3 project meetings:• 22-23 September 2016 (Viena)-> input to the pilot shaping• Meetings of Network of Resource Centres & Social Services: May 2017 (Romania), April 2018 (Norway)

Process• List of policy makers to invite: with input from Social Policy Advisory Group & National Alliances• Coordination with EC to pass on invitation to Expert Group on Rare Diseases as well• Invitation email sent out to all contacts early May• Recruitment to be concluded in upcoming weeks








Case Manager

Resource Centres

1919

Social Impact


benefit

INNOVCare = Opportunities

Good practices





Care pathways in MS


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Edinburgh, May [email protected]

Documents

INNOVCare Project, Raquel Castro