Your SlideShare is downloading. ×
0
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Upcoming SlideShare
Loading in...5
×

Thanks for flagging this SlideShare!

Oops! An error has occurred.

×
Saving this for later? Get the SlideShare app to save on your phone or tablet. Read anywhere, anytime – even offline.
Text the download link to your phone
Standard text messaging rates apply

Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"

728

Published on

Workshop 2 - Centres of expertise & Networks of experts …

Workshop 2 - Centres of expertise & Networks of experts
"EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Birthe Holm, Rare Disorders Denmark

0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total Views
728
On Slideshare
0
From Embeds
0
Number of Embeds
1
Actions
Shares
0
Downloads
10
Comments
0
Likes
0
Embeds 0
No embeds

Report content
Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
No notes for slide

Transcript

  • 1. Centres of expertise & Networks of experts Birthe Byskov Holm Rare Disorders Denmark Amsterdam May 14. 2011
  • 2. Centres of expertise &amp; Networks of experts <ul><li>Eurordis Policy – setting the scene </li></ul><ul><ul><li>Eurordis Position Paper </li></ul></ul><ul><ul><li>Eurordis Declaration </li></ul></ul><ul><ul><li>Eurordis Fact Sheets </li></ul></ul><ul><ul><li>EU-Recommendation </li></ul></ul><ul><ul><li>Cross-border-directive </li></ul></ul>
  • 3. Centres of expertise &amp; Networks of experts <ul><li>Annual Membership Meeting Berlin 2006 </li></ul><ul><li>Rapsody-Project 2006-2008 </li></ul><ul><ul><li>National workshops in 11 EU MS </li></ul></ul><ul><ul><li>EU workshop, Prague 2007 </li></ul></ul><ul><ul><li>EU Conference, Lisbon 2007 </li></ul></ul><ul><li>Eurordis Care 3 Survey 2008 </li></ul><ul><li>Polka-Project </li></ul><ul><li>Participation working groups/dialogue </li></ul>
  • 4. Eurordis Policy Recommendations <ul><li>“ Placing the patient at the centre of the system” </li></ul>
  • 5. Rare citizens in EU <ul><li>Who are the patients? </li></ul><ul><ul><li>30 millions affected in Europe </li></ul></ul><ul><ul><li>5.000 to 7.000 rare diseases </li></ul></ul><ul><ul><li>3.500 affect only a few worldwide </li></ul></ul><ul><ul><li>250 new diseases described per year </li></ul></ul>
  • 6. BUT
  • 7. Rare citizens in EU <ul><li>Limited no. of patients within each disease </li></ul><ul><li>General limited knowledge </li></ul><ul><li>Scarcity of expertise </li></ul><ul><li>High level of complexity </li></ul><ul><li>For many patients no cure or effective treatment available </li></ul>
  • 8. Eurordis Policy Recommendations <ul><li>Fundamental elements </li></ul><ul><li>Professional qualifications/committment </li></ul><ul><li>Multidisciplinary and comprehensive approach </li></ul><ul><li>Coordination </li></ul><ul><li>Access and mobility </li></ul><ul><li>Empowerment of patients </li></ul><ul><li>Education and training </li></ul>
  • 9. Eurordis Policy Recommendations <ul><li>Fundamental elements , continued </li></ul><ul><li>Main expectations </li></ul><ul><li>Collaboration: professionals/patients </li></ul><ul><li>Evaluation: method and criteria </li></ul><ul><li>Sustainability </li></ul><ul><li>Flexibility and inclusive approach </li></ul><ul><li>Pooling patients </li></ul>
  • 10. Multidisciplinary and comprehensive approach <ul><li>Organising care through a multidisciplinary approach </li></ul><ul><li>” Care” means integrating medical and social aspects at all levels </li></ul><ul><li>Call for coordinated patient/case- management, patient centred care, avoidance of disconnected care </li></ul><ul><li>Organisation of pathways by therapeutic areas? </li></ul>
  • 11. Coordination <ul><li>Within and between: </li></ul><ul><li>Primary care, experts, local specialists, centres of expertise, network of experts, research activities, social and other services, paramedical services, information, patient organisations, reimbursements bodies, cross-border care? </li></ul><ul><li>Call for governance, structure, pathways, patient/casemanagement </li></ul>
  • 12. Access and mobility <ul><li>” expertise should travel rather than patients,who should travel in another MS only when they consider it necessary” </li></ul><ul><li>Challenges and barriers to overcome: </li></ul><ul><ul><li>psychological, physical, technical,language, cultural, reimbursement, legal… </li></ul></ul><ul><li>Call for respect, trust, pathways, cooperative atmosphere and attitude, infrastructures. </li></ul>
  • 13. Main expectations <ul><li>Improvement of quality diagnosis and care </li></ul><ul><ul><li>Best practices, protocols, guidelines integrating medical and social aspects </li></ul></ul><ul><li>Ensuring equity (-post code lottery) </li></ul><ul><li>Real access and possibility to travel </li></ul><ul><li>Facilitate research </li></ul><ul><li>Call for structure, management and funding on national and EU level </li></ul>
  • 14. Sustainability <ul><li>L ong term funding </li></ul><ul><li>Solid structures </li></ul><ul><li>Good governance </li></ul><ul><li>Cooperation with patients/organisations </li></ul><ul><li>Acknowledgement through evidence of better quality of life and cost-effectiveness </li></ul>
  • 15. Flexibility and inclusive approach <ul><li>” Patients in every European country should benefit from an ERN” </li></ul><ul><li>Diversity (in diseases, patients, healthcare-systems…) </li></ul><ul><li>Challenge or option? </li></ul><ul><li>Different strategy according to country size? </li></ul>
  • 16. Centres of expertise &amp; Networks of experts <ul><li>Sustainability </li></ul><ul><li>Tasks/”job description” according to the patients needs </li></ul><ul><li>Structure and governance </li></ul><ul><li>Role of patient organisations </li></ul><ul><li>Evaluation: Activities and effect </li></ul><ul><li>Flexible and inclusive approach setting the patient at the centre </li></ul>
  • 17. Thank you for your attention <ul><li>Keep in mind to put the rare citizen in the middle. </li></ul><ul><li>Birthe Byskov Holm, Rare Disorders Denmark, bbh@sjaeldnediagnoser.dk </li></ul>
  • 18. Centres of expertise &amp; Networks of experts <ul><li>Cross-border directive (art.12): </li></ul><ul><li>” ERN between health providers and centres of expertise…based on voluntary participation..contributing…accordance with the legislation of MS….open to new health providers…provided healthcare providers fulfil …conditions and criteria …set by the Commission” </li></ul>

×