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

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

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

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

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

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

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

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!

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

Aims  Can we enhance communication? –Bringing together specialists –But without separation of the clinicians?

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, December, 1990  Book: Walter Land; John Dossetor 1991

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

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

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

5 objectives of ELPAT 1.Organize a conference 2.Establish a secretariat and initial resources 3.Bring continuity and structure 4.Be helpful in solving differences between European countries, For instance in formulating guidelines 5.Inform the general public

#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, April 2007

#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

#3 Continuity and structure  Establish a cooperation with ESOT –Clear link to clinicians –Professional –Economy of scale  Website – –  Newsletter –Twice a year

#3 Continuity and structure  A book –Reflecting the main discussion themes of the Rotterdam 2007 conference  See

#3 Continuity and structure

#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

#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

#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

Priorities  6 priorities 1.Deceased donation 2.Legal aspects 3.Subpopulations 4.Organ tourism 5.Psychological care for living donors and recipients 6.Samaritan donation  As established on Rotterdam conference –Are the same as themes of working groups

#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

#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 –Policy proposal

#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

#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

#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

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

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

Did it work so fare?  Conference 2007 Rotterdam was a success –300 participants

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

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

Decisive factor?

Decisive factor

Hope to see you again…