Jan J. V. Busschbach
Leonieke Kranenburg
Recommendations of the European
Platform on “Ethical, Legal and
Psychological Aspects of Organ
Transplantation”
Content
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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
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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, 11-14 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
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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.
2.
3.
4.
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
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, 1 - 4 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
– www.elpat.org
– www.esot.org
 Newsletter
– Twice a year
#3 Continuity and structure
 A book
– Reflecting the main
discussion themes of the
Rotterdam 2007
conference
 See www.elpat.org
#3 Continuity and structure
2002
2007
#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
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6.
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
#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
– 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
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Exchange of information, web links, meetings
Article
Survey + 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
– 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…