European Reference Networks

Transcription

1 European Reference Networks Issues addressed and key support developments of the Member States to the networks Till Voigtländer 4 th Conference on European Reference Networks: ERNs in action, Charlemagne Building, Brussels, 21-22/11/2018

2 Contents» Specifying the term Issues addressed» What are main issues to be addressed» How to address these issues» Where are we right now

3 Specifying the term Issues addressed» Issues (successfully) addressed in the past» Issues that are currently addressed» Issues addressed up to the level of an intermediate solution but that need further attention» Issues that need to be addressed in the future

4 What are main issues to be addressed (1) 200» Imbalanced Member State representation across 180 all ERNs (0-186 full members) 160 Member State representation across all ERNs Number of full members AT BE BG CY CZ DE DK EE ES FI FR GR HR HU IE IT LT LU LV MT NL NO PL PT RO SE SI SK UK Member States

5 Number of full members What are main issues to be addressed (1) 25» Imbalanced Member State representation across all ERNs (0-186 full members) 20» Imbalanced Member State representation within 15 single ERNs (for instance 21 out of 66 members from one MS) 10 Member State representation within a given ERN 5 0 AT BE BG CY CZ DE DK EE ES FI FR GR HR HU IE IT LT LU LV MT NL NO PL PT RO SE SI SK UK Member States

6 What are main issues to be addressed (1)» Imbalanced Member State representation across all ERNs (0-186 full members)» Imbalanced Member State representation within single ERNs (for instance 21 out of 66 members from one MS)» Development of steering elements to evaluate, monitor and support the performance of the networks» Ethical aspects in the relation and cooperation with third parties (industry, other stakeholders)» Seamless integration of ERNs and their members into the national health care systems

7 What are main issues to be addressed (2)» Gaps in the coverage of disease groups within ERNs» Funding aspects

8 How to address these issues» Tools» Establishment, refinement and better interaction of governance structures» Board of Member States on ERN (BoMS; legal body)» ERN Coordinators Group (ERN-CG; ERN initiative)» Establishment of working groups (selection)» WG on Affiliated partners (BoMS)» WG on ERN Continuous Monitoring and Quality Improvement System (BoMS & ERN-CG)» WG on Integration of ERNs into national health systems (BoMS & ERN-CG)» WG on Ethical and Legal issues, relation with Stakeholders (BoMS & ERN-CG)» Development of concepts and instruments

9 WG on Affiliated partners Where are we Detailed - trying concept to address of the issues (1) Associated National Centres (ANC)» Imbalanced Member Coordination State representation hubs across all ERNs (0-186 First full roll-out members) between 12/2018 and 04/2019 (approx.) MS-based identification of new candidates for full membership Inclusion based on the timeline of the next call and the assessment of the candidates

10 WG on Affiliated partners Where are we - trying to address the issues (2) Detailed concept of Associated National Centres (ANC)» Imbalanced Member State representation across Coordination hubs all ERNs (0-186 full members)» Imbalanced MS-based Member identification State representation of new within single ERNs candidates (for instance for full 21 membership out of 66 members from one MS)» Development of steering elements to evaluate, WG on ERN Monitoring monitor and support the performance of the Stepwise development of indicators networks Development of an IT-based Continuous Monitoring and Quality Improvement System Feedback to BoMS and individual MS concerned

11 Where are we - trying to address the issues (3)» Imbalanced Member State representation across all ERNs (0-186 full members)» Imbalanced Member State representation within single ERNs WG (for on Ethical instance and 21 legal out of issues 66 members from one MS) Further development of the BoMS» Development statement of steering on elements ERNs and to Industry evaluate, and guide monitor / support and support the the performance of the of networks the networks» Ethical aspects in the relation and cooperation with third parties (industry, other stakeholders)

12 Where are we - trying to address the issues (4)» Imbalanced Member State representation across all ERNs (0-186 full members)» Imbalanced WG Member on Integration State representation of ERNs in national within single ERNs health (for systems instance 21 out of 66 members from one MS) 28 Member States =» Development 28 of different steering healthcare elements to systems evaluate, and guide monitor / support and Need support the for 28 the performance tailored of solutions the of networks the networks» Ethical aspects Need in to the involve relation several and cooperation (different) with» third Ethical parties aspects stakeholders (industry, the relation other in each stakeholders) and Member cooperation State with third parties (industry, other stakeholders)» Seamless integration of ERNs and their members into the national health care systems

13 Where are we - trying to address the issues (4)» Imbalanced Member State representation across all ERNs (0-186 full members)» Imbalanced WG Member on Integration State representation of ERNs in national within single ERNs health (for systems instance 21 out of 66 members from one MS) 28 Member States =» Development 28 of different steering healthcare elements to systems evaluate, and guide monitor / support and Need support the for 28 the performance tailored of solutions the of networks the networks» Ethical aspects Need in to the involve relation several and cooperation (different) with» third Ethical parties aspects stakeholders (industry, the relation other in each stakeholders) and Member cooperation State with third parties (industry, other stakeholders)» Seamless integration of ERNs and their members into the national health care systems

14 Where are we - trying to address the issues (5)» Gaps in the coverage of disease groups within ERNs ERN-CG analysis Further calls for members in ERNs Support by Member States in identifying appropriate candidates

15 Where are we /MS - trying funding to address the issues (6) 1 million EURO/ERN/5 years cycle» Gaps in the coverage of disease groups within ERNs Funding strategies have to be decided» Funding aspects between the, the European» ERN coordination Parliament and the MS Multiannual Financial Framework» ERN activities (MFF)» Registries» Guideline Participation development of industry and other stakeholders» Research» CPMS panels

16 Where are we - trying to address the issues (6)» Gaps in the coverage /MS of funding disease instruments groups within ERNs European Joint Programme» Funding aspects Co-Fund on Rare Diseases (EJP; )» ERN coordination Innovative Medicines Initiative» ERN activities ( )» Registries Long-term strategy?» Guideline development» Research» CPMS panels New ideas and concepts are needed

17 Summary» Specifying the term Issues addressed» What are main issues to be addressed» How to address these issues» Where are we right now

18 Das ERN-Konzept in der Computeranimation uh board_member_states/index_en.htm Cluster