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Session 2 graf_von_der_schulenburg

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Session 2 graf_von_der_schulenburg

  1. 1. The German Plan for Rare Diseases: A Development in Progress J.-Matthias Graf von der Schulenburg Krakow, 14 May 2010
  2. 2. Three questions <ul><li>What is the issue? </li></ul><ul><li>What do we know? </li></ul><ul><li>What has to be done? </li></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  3. 3. Three questions <ul><li>What is the issue? </li></ul><ul><li>What do we know? </li></ul><ul><li>What has to be done? </li></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  4. 4. Why do we need health service research ? Dimensions of an economic evaluation… © Prof. Dr. J.-M. Graf von der Schulenburg Allocation Efficiency Stabilization Cost stability and continuity of the system Distribution Fair allocation Facts Appraisements
  5. 5. Three questions <ul><li>What is the issue? </li></ul><ul><li>What do we know? </li></ul><ul><li>What has to be done? </li></ul>© Prof. Dr. J.-M. Graf von der Schulenburg “ Are we actually moving in a circular course, Olaf?”
  6. 6. <ul><li>Altogether only insufficient scientific knowledge (studies, publications etc.) about the life situation, the quality and the range of care for people with Rare Diseases in the German health care system </li></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  7. 7. How do we proceed? <ul><li>BMG-study </li></ul><ul><ul><li>Literature research </li></ul></ul><ul><ul><li>Discussions with experts and persons concerned </li></ul></ul><ul><ul><li>Discussions with focus groups </li></ul></ul><ul><ul><li>Wide survey with a questionnaire </li></ul></ul><ul><li>Specific evaluation depending on an indication (CF-study) </li></ul><ul><li>EU-study </li></ul><ul><ul><li>Social Economic Burden and Health-Related Quality of Life in Patients with Rare Diseases in Europe (BURQOL-RD) </li></ul></ul><ul><ul><li>Coordinator: Prof. Bastida / Spain </li></ul></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  8. 8. Which perspectives were taken into account? © Prof. Dr. J.-M. Graf von der Schulenburg Patient organizations (people concerned) Evaluation of experiences Health care provider (physicians, industry) Evaluation of markets and science Public organizations/ benefactors Evaluation of structures
  9. 9. Rare Diseases are currently attracting insufficient attention in Germany © Prof. Dr. J.-M. Graf von der Schulenburg Quelle : BMG-study 2009
  10. 10. Which individual care factors are important for patients? © Prof. Dr. J.-M. Graf von der Schulenburg Source: BMG-study 2009 High competence of medical care Information about new treatment possibilities Psychosocial care … Fast access to new drugs Europe-wide treatment options Close to residential care
  11. 11. Patients with Rare Diseases need a comprehensive and specialised care <ul><li>Qualified health care providers (medical and non-medical) are necessary </li></ul><ul><ul><li>Only a few specialists </li></ul></ul><ul><ul><li>University hospitals </li></ul></ul><ul><li>Patients have a high and comprehensive demand for care </li></ul><ul><ul><li>The German health care system is separated into different sectors </li></ul></ul><ul><ul><li>High ambulatory, inpatient and rehabilitative health care utilisation </li></ul></ul><ul><ul><li>Professionals in different sectors of care and interdisciplinary cooperation are necessary </li></ul></ul><ul><ul><li>Trans-sectoral concepts of care are essential </li></ul></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  12. 12. <ul><li>… economically uninteresting: </li></ul>Rare Diseases from health care providers point of view: © Prof. Dr. J.-M. Graf von der Schulenburg Costs of ambulatory treatment for Mucoviscidosis Source: Mucoviscidosis-study 2007 0 – 7 years 8 – 13 years 14 – 17 years 18 – 24 years 25 – 34 years 35 Jahre and older 300 400 500 600 100 200 Reimbursement Other costs Physiotherapy, diet guidance Diagnostic service Laboratory checkup Routine checkup Additional costs of the institute
  13. 13. Three questions <ul><li>What is the issue? </li></ul><ul><li>What do we know? </li></ul><ul><li>What has to be done? </li></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  14. 14. Recommendations of the study <ul><li>Implementation of National and European Centres of Reference or Expertise </li></ul><ul><li>Development and implementation of Shared-Care Models </li></ul><ul><li>Augment the evidence of drugs in Off-Label-Use </li></ul><ul><li>Creating and using therapy guidelines / clinical pathways </li></ul><ul><li>Intensified European co-operation </li></ul><ul><li>Formation of a national coalition for Rare Diseases under clear objectives and with a firm time schedule </li></ul><ul><li>Development of a German National Plan for Rare Diseases </li></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  15. 15. <ul><li>Development of recommendations and realisation of them: </li></ul><ul><li>A national action league for people with Rare Diseases (NAMSE) , </li></ul><ul><li>where the different perspectives of all relevant stakeholders are considered </li></ul><ul><li>Aim/result: </li></ul><ul><li>German National Plan for people with Rare Diseases </li></ul><ul><li>Announcement: 8. March 2010 </li></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  16. 16. Aims of NAMSE <ul><ul><li>Implement the recommendations of the Council of the EU </li></ul></ul><ul><ul><li>Concentrate the current initiatives in the field of Rare Diseases </li></ul></ul><ul><ul><li>Enable common, coordinated and targeted activities in the field of Rare Diseases </li></ul></ul><ul><ul><li>Contributions for a German National Plan for people with Rare Diseases </li></ul></ul><ul><ul><li>Assist the establishment of national Reference or Expertise Centres </li></ul></ul><ul><ul><li>Encourage pilot projects and actions in the field of Rare Diseases </li></ul></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  17. 17. <ul><li>Steering committee (SC) </li></ul><ul><ul><li>Decisions and controlling board </li></ul></ul><ul><ul><li>Members from different stakeholders of the health care system respectively point of view </li></ul></ul><ul><ul><li>Decision-making about e.g. </li></ul></ul><ul><ul><ul><li>Basic goals </li></ul></ul></ul><ul><ul><ul><li>Spheres of activity </li></ul></ul></ul><ul><ul><ul><li>Creation and staffing of working groups </li></ul></ul></ul><ul><ul><li>Proving and evaluating results of the working groups </li></ul></ul><ul><ul><li>Adopt recommendations and the implementation of them </li></ul></ul><ul><ul><li>Meet bimonthly </li></ul></ul>Organisation © Prof. Dr. J.-M. Graf von der Schulenburg
  18. 18. <ul><li>Working groups </li></ul><ul><ul><li>Provide functional and continual work </li></ul></ul><ul><ul><li>Will be attended by the responsible departments of the BMG, the BMBF and the self-help alliance for Rare Diseases in Germany ACHSE e.V. </li></ul></ul><ul><ul><li>Staffing with experts and people concerned (according to the aim or question of the working group) </li></ul></ul><ul><ul><li>Possibility to subdivide in the case of complex problems </li></ul></ul><ul><ul><li>Sum up all results in written form </li></ul></ul><ul><ul><li>Regularly reporting the steering committee </li></ul></ul><ul><ul><li>Meeting frequency as required </li></ul></ul>Organisation © Prof. Dr. J.-M. Graf von der Schulenburg
  19. 19. <ul><li>External office of BMG </li></ul><ul><ul><li>Coordinating the activity of NAMSE (Communication centre) </li></ul></ul><ul><ul><li>Scientific, administrative and organizational support of NAMSE </li></ul></ul><ul><ul><li>Organisation of the conferences for the steering group as well as the working groups </li></ul></ul><ul><ul><li>Public Relations in coordination with the steering group </li></ul></ul><ul><ul><li>Preparation of (pilot-)projects </li></ul></ul>Organisation © Prof. Dr. J.-M. Graf von der Schulenburg
  20. 20. <ul><li>Patient information /transfer of knowledge </li></ul><ul><li>Diagnostics and therapy (including the development of guidelines) </li></ul><ul><li>Health care as well as quality assurance </li></ul><ul><li>National and European networks of Reference and Expertise Centres </li></ul><ul><li>Research </li></ul><ul><li>Other topics , created by the steering committee </li></ul>Spheres of activity © Prof. Dr. J.-M. Graf von der Schulenburg
  21. 21. Timetable <ul><li>Announcement of NAMSE </li></ul><ul><ul><li>March 2010 </li></ul></ul><ul><li>Constituent meeting </li></ul><ul><ul><li>Summer 2010 </li></ul></ul><ul><li>Finalisation German National Plan for Rare Diseases </li></ul><ul><ul><li>Year 2013 </li></ul></ul>© Prof. Dr. J.-M. Graf von der Schulenburg
  22. 22. Thank you for your attention!

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