- knowledge transfer and exchange
- Thursday 8 October 2015, 21:32 - Friday 9 October 2015, 21:32 (CEST)
Practical information
- When
- Thursday 8 October 2015, 21:32 - Friday 9 October 2015, 21:32 (CEST)
- Languages
- English
Report
Lisbon, Portugal
Lisbon, 8-9 October 2015
About the Conference
DG Health and Food Safety has organised the “2nd conference on European Reference Networks (ERN)” on 8-9 October 2015 in Lisbon, Portugal.
This 2nd conference, hosted by the Ministry of Health of Portugal, was included as an event of the Luxembourgish EU Presidency. The conference built on the success of the 1st conference on European Reference Networks, which took place in Brussels June 23rd 2014.
The Conference can be considered as a great success in terms of participation, high quality of the speakers and presentations and substantial commitment and engagement of all the players: politicians, experts, managers, healthcare professionals and providers, patients and other stakeholders.
The conference focused on the implementation of ERN under the Directive 2011/24/EU with the goal to support interested highly specialised networks and centres of expertise across the EU already preparing for the call for ERN in early 2016. Further the draft of the assessment manual and toolbox to be used for the technical assessment of the Network proposals was presented.
Valuable feedback was received and a number of strategic and technical points clarified on issues such as the sustainability , the scope , the key role of Member States, the need avoiding duplication of efforts or fragmentation, and mechanisms for sharing experience between ERNs once they are up and running. The Patient-centricity was stressed throughout all topics.
As main conclusions of the conference can be summed up, that there is a
- Strong political and strategic support from Member States,
- High engagement and commitment of all the stakeholders involved,
- Readiness of many candidates to present high quality ERN proposals,
- Recognition of the EU added value of the ERNs and the strong will to put the potential of European cooperation regarding highly specialised healthcare into practice,
- Need of a strategic vision on the scope and likely number of networks that MS should agree upon,
- Expectation that e-Health tools and services are the major building brick of the ERN,
- Need to develop a strategy agreed with the Member States on the ERN implementation addressing possible scenarios and the need for sustainability of ERNs in the medium and long term.
More information and details:
Presentations and videos
08 October 2015
WELCOME ADDRESS
Xavier Prats Monné - Director General of DG SANTE
(VIDEO)
ROUNDTABLE I: FRAMEWORK FOR THE ESTABLISHMENT OF EUROPEAN REFERENCE NETWORKS
Introduction by the Chair: Andrzej Rys - Director Health Systems and Products, European Commission - DG Health and Food Safety
(VIDEO)
- Implementation process: timeline and milestones
Enrique Terol
European Commission - DG Health and Food Safety
(VIDEO) - Manual for Technical Assessment of the ERNs
Matt Johnson and Louise Clement - PACE-ERN Consortium
(VIDEO) - Approval of Networks: the ERNs Board of Member States
Till Voigtländer - Co-chair Board of Member States
Clinical Institute of Neurology, Medical University
(VIDEO) - Debate & Questions
(VIDEO - Part I);
ROUNDTABLE II: EUROPEAN REFERENCE NETWORKS: STRATEGIC VALUE FOR THE MEMBER STATES
Chair: Anne Calteux - Ministry of Health Luxembourg
(VIDEO)
- Strategic value of ERN for France
Patrice Dosquet
Ministry of Health France
(VIDEO) - Strategic value of ERN for Portugal
Alexandre Diniz
Ministry of Health Portugal
(VIDEO) - Strategic value of ERN for Lithuania
Arimantas Tamašauskas
Lithuanian University of Health Sciences
(VIDEO) - Debate & Questions
(VIDEO)
Ministerial high level roundtable - ERN a strategic value for the EU citizens and health care systems
- Paulo Macedo - Minister of Health of Portugal
(VIDEO) - Lydia Mutsch - Minister of Health of Luxembourg
(VIDEO) - Xavier Prats Monné - Director General of European Commission - DG Health and Food Safety
(VIDEO)
ROUNDTABLE III: NETWORK ORGANISATIONAL CHALLENGES AND EXPERIENCES: ISSUES, SOLUTIONS AND LESSONS LEARNED
Chair: Peter O'Donnell - Healthcare Journalist at POLITICO
(VIDEO)
- Rare Diseases Networks: lesson learned, grouping diseases
Kate Bushby
EUCERD Joint Action
(VIDEO) - The network coordinator view
Ruth Ladenstein
Expo-R-Net pilot network
(VIDEO) - The patient’s views
Yann le Cam
EURORDIS patient organisation
(VIDEO) - Debate & Questions
(VIDEO)
ROUNDTABLE IV: ERN AND BETTER HEALTH OUTCOMES: GOOD CLINICAL PRACTICES
Chair: Jorge Penedo - Ministry of Health Portugal
(VIDEO)
- Healthcare guidelines, recommendations, clinical pathways
Paola Laricchiuta
Istituto Superiore di Sanità, National Centre for Rare Diseases
(VIDEO) - Evidence-based practices and rare / low prevalence diseases
Domenica Taruscio
Istituto Superiore di Sanità, National Centre for Rare Diseases
(VIDEO) - Continuous Clinical Improvement and performance and outcome indicators
Karen Ritchie
Healthcare Improvement Scotland
(VIDEO) - Debate & Questions
(VIDEO)
ROUNDTABLE V: NETWORK CHALLENGES: EHEALTH AND IT SOLUTIONS
Chair: Jaroslaw Waligora, European Commission - DG Health and Food Safety
(VIDEO)
- WEB technology for collecting, handling and elaborating data: The SIOPEL experience
Piotr Czauderna
SIOPEL and Expo-R-Net member
(VIDEO) - Sharing information on Healthcare across Europe - Lessons from EXPAND
Henrique Martins
EXPAND project coordinator
(VIDEO) - Debate & Questions
(VIDEO) - Closing remarks - Conclusions and call for action
Enrique Terol
European Commission - DG Health and Food Safety
(VIDEO)
09 October 2015
How to perform a self-assessment and prepare for a strong application?
Chair: Enrique Terol - European Commission - DG Health and Food Safety
(VIDEO)
- Overview and presentation of the assessment process and tools
Louise Clement and Paula Greco
PACE-ERN Consortium
WORKSHOP 1 - HOW TO PREPARE A SUCCESSFUL PROPOSAL TO BUILD AN ERN?
Facilitator: Willy Palm - Health Observatory of Health Systems
Experts:
- Barbara Brunmair
ExPO-r-Net pilot Network (rare cancers in children) - Philippe Ryvlin
E-Pilepsy pilot Network - Luca Sangiorgi
Coordinator of a network on Rare Skeletal Diseases - Reinhard Holl
Network on rare diabetes in children - JLL Vives Corron
ENERCA network on rare anaemias - Louise Clement & Paula Greco - PACE-ERN Consortium
WORKSHOP 2 - HOW TO DEVELOP, USE AND APPRAISE CLINICAL DECISION MAKING TOOLS?
Facilitator:
- Suszy Lessof
European Observatory on Health Systems and Policies
Experts:
- Michele Hilton-Boon
University of Glasgow - Paola Laricchiuta & Domenica Taruscio
Istituto Superiore di Sanità, National Centre for Rare Diseases - Karen Ritchie
Healthcare Improvement Scotland - Charles Bruneau & Matt Johnson
PACE-ERN Consortium
WORKSHOP 3 - CLINICAL RESEARCH IN A NETWORK ENVIRONMENT
Facilitator:
- Irene Glinos
European Observatory on Health Systems and Policies
Experts:
- Zuleika SAZ PARKINSON
European Commission - Joint Research Center - Pascale Flamant
UNICANCER - Maurizio Scarpa
Expert in clinical trials in rare diseases - Samantha Parker
Lysogene - Denis Lacombe
EORTC
WORKSHOP 4 - RARE DISEASES NETWORKS: LESSONS LEARNED, GROUPING DISEASES AND PATIENT INVOLVEMENT
Facilitator:
- Matthias Wismar
European Observatory on Health Systems and Policies
Experts:
- Kate Bushby
EUCERD Joint Action, Newcastle University - Victoria Hedley
EUCERD Joint Action, Newcastle University - Yann Le Cam
EURORDIS - Teresinha Evangelista
EUCERD Joint Action, Newcastle University