Jan J. V. Busschbach Leonieke Kranenburg

1. Jan J. V. BusschbachLeonieke Kranenburg Recommendations of the European Platform on “Ethical, Legal and Psychological Aspects of Organ Transplantation” ELPAT

2. Content • Why ELPAT? • The six working groups of ELPAT • Program for the near future • How does it works? ELPAT

3. Why ELPAT? • Scarcity of donor organs • Ever since transplantation started • Although it has been contested by medical progress • Scarcity might also be increase… • By medical progress • By social demographic factors • Scarcity… in fact distribution problem • Scarcity seems function of health policy • We should address Ethical, Legal and Psychological Aspects of organ Transplantation: ELPAT

4. No fluid progress • In health policy progress seems less clear • than the medical advancements in transplantation • Examples • Failure to increase post mortem donation • Failure to control commercial donation • No real progress over 20 years • some even suggest decline • Increasing waiting lists

5. Obstructive factors • One can think of several obstructive factors • Ethical, Legal and Psychological Aspects • Embedded in local…. • National values • Health care systems • National political systems • Difficulty implementing international research efforts • What fits in one country, might not be possible in the other

6. But there are also chances... • We can see different systems at work… • We can observe real life experiments • Often on a nation size level

7. Naturalistic setting • Questionable design… • Lead comparisons of national differences to knowledge? • Is this Evidence Based Medicine? • Where is the experiment? • Successful non experimental sciences • Economics • Policy sciences • Philosophy, Ethics • Transplantation…. • Level II-3: Evidence obtained from multiple time series with or without the intervention. Dramatic results in uncontrolled trials might also be regarded as this type of evidence

8. Facilitated comparisons • Bring together natural settings • Make outcomes comparable • Covariate designs • Bench marking • Discussing different setting already works! • General rule: • Quality increases when comparing different setting • So… facilitate communication between countries!

9. Ad hoc communication • Comparisons leads progress • But communication between countries still ad hoc • No designated journal • No designated platform • Advantages • No separation of clinicians • Disadvantages • No continuity • Difficulty building scientific community • Stacking results

10. Aims • Can we enhance communication? • Bringing together specialists • But without separation of the clinicians?

11. Ad hoc initiatives in the past • Organ Replacement Therapy: Ethics, Justice and Commerce • First joint meeting of ESOT and EDTA/ERA • ERA = European Renal Association • Munich, 11-14 December, 1990 • Book: Walter Land; John Dossetor 1991

12. Ad hoc initiatives in the past • Ethical, Legal and Social issues in Organ Transplantation • Land, Gutman,Sells & Daar • December 2002 • Munich • Again Successful • Report by book • Nevertheless ad hoc

13. Continuity: platform • There seems to be a need… • ..but can we establish continuity? • Try to replicate last initiative in Munich • Initiative of Erasmus MC, Dutch Transplantation Foundation, and Dutch Health Council • Add continuity: • Establish a European platform ELPAT

14. Initiative ELPAT • Mike Bos • Jan J.V. Busschbach • Bernadette Haase-Kromwijk • Medard Hilhorst • Leonieke Kranenburg • Jan Passchier • Guido Persijn • Willem Weimar (chair) • Willij Zuidema

15. 5 objectives of ELPAT • Organize a conference • Establish a secretariat and initial resources • Bring continuity and structure • Be helpful in solving differences between European countries, For instance in formulating guidelines • Inform the general public

16. #1: International conference • Organize an international conference • To mark the start of the platform • Facilitate high quality scientific communication • Help to formulate priorities • in research and policy for the Platform • Rotterdam, 1 - 4 April 2007

17. #2 Secretariat and initial resources • ELPAT successfully applied for a grant of the European Union • For the conference • For the platform • Sufficient for 0.2 FTE secretariat and 0.5 FTE coordinator for the first year, that is until April 2008 • Dr. Leonieke Kranenburg • Applied for additional EU funds

18. #3 Continuity and structure • Establish a cooperation with ESOT • Clear link to clinicians • Professional • Economy of scale • Website • www.elpat.org • www.esot.org • Newsletter • Twice a year

19. #3 Continuity and structure • A book • Reflecting the main discussion themes of the Rotterdam 2007 conference • See www.elpat.org

20. #3 Continuity and structure 2002 2007

21. #3 Continuity and structure • Small scale working group meetings… • …for specific priority topics • Topic identified during the meeting 2007 in Rotterdam • Satellite meetings ESOT • synchronized with ESOT meeting • Large stand alone meetings • Organize large ‘stand alone’ conference every 4 year • Rotterdam 2010 • Establish a network of professionals

22. #4 European guidelines • Towards a common European policy • Make draft recommendations and guidelines • Link to Europe • The Platform will try to be a link with European organizations • e.g. EU, Council of Europe, ESOT

23. #5 Inform the general public • Informing the general public … • about new developments in the field of ethical, legal and psychological aspects of organ transplantation • Invested in popular media during conference • Making pages at website for lay people • Provide state-of-the-art information

24. Priorities • 6 priorities • Deceased donation • Legal aspects • Subpopulations • Organ tourism • Psychological care for living donors and recipients • Samaritan donation • As established on Rotterdam conference • Are the same as themes of working groups

25. #1 Deceased donation • Study topics • Role personal attitudes of health care professionals • Expanded donor criteria • Children as donors? • Communication • What is the best psychological and communicative approach • What is the best moment of asking • Deliverables • Survey about differences in transplant professionals’ attitudes regarding deceased donors • An scientific article

26. #2 Legal aspects • Study topics • Differences in allowed donor-recipient relationship • Identify restricting parts of the law in various countries • New allocation systems • living donor list exchange, reciprocal donation, etc • Deliverables • Article • Article • Policy proposal

27. #3 Subpopulations • Study objectives • Inequalities in organ donation & transplantation • among diverse groups • ethnicity / social class / gender / religion, both for living and deceased donation. • How can we reduce inequalities? • Deliverables • Literature review

28. #4 Organ tourism • Objectives • Increase communication • between countries, relevant organizations as WHO, EU • Definition of terms • What is the difference between organ tourism, organ trafficking, commercialism, paid donation, a regulated market? • Facts and figures • What are the moral issues in paid donation? • Deliverables • Exchange of information, web links, meetings • Article • Survey + article • Survey + article

29. #5 Psychological care for living donors and recipients • Study objectives • What are the differences between in ex- and inclusion criteria? • Deliverables • Article literature review • Article survey • Policy proposal

30. #6 Samaritan donation • Objectives • List plans and obstacles in the EU • Psychological evaluation • In- and exclusion criteria • Follow up after transplantation • Deliverables • Survey + article • Survey + article

31. How does it work… • Web based • Discussion groups • Communities • Members organize research • Small working group meetings • The first in Nice, November 14, 2007 • Open meetings • 14th ESOT Congress, Paris August 30, 2009 • 2nd ELPAT Congress, Rotterdam, 18 April, 2010 • 15th ESOT Congress, Glasgow, September 4, 2011

32. Did it work so fare? • Conference 2007 Rotterdam was a success • 300 participants

33. Did it work so fare? • ELPAT was embedded in ESOT • Physician onboard • The EU paid until April 2008 • We applied for new funds

34. Did it work so fare? • The Prague October 2, 2007 ESOT meeting was a success • Over 350 participants

35. Decisive factor?

36. Decisive factor You

37. Hope to see you again…