Terms of Reference
Review of Deceased Organ Donation and Transplantation
Purpose
The Review of Deceased Organ Donation and Transplantation (the Review) will identify,
assess, and recommend actions to increase solid organ donation rates to support an
increase in transplantation rates in New Zealand, with a primary focus on increasing
deceased organ donation rates.
Objectives
The Review will report to the Minister of Health on:
 the current situation in New Zealand, including an overview of current domestic patterns
and trends, practices, systems, processes, and recent initiatives to increase organ
donation and transplantation rates
 international experience and features of higher performing organ donation systems
 issues in New Zealand’s donation and transplantation system and aspects that could be
changed to increase deceased solid organ donation and transplantation rates
 recommendations for change.
Background
New Zealand has relatively low deceased organ donation rates compared with other
developed countries. Our donation rate is around 10 per million people (pmp), compared to
Australia which has around 16 pmp, and Spain which has the highest rate at around 36 pmp.
We have a large and growing number of people waiting for kidney transplants, with 600-700
people usually waiting for a kidney transplant from a deceased donor, and around 40 people
waiting for liver, cardiac or lung transplants.
New Zealand’s low donation rate is a long-standing issue. To date, our approach to
improving deceased organ donation has been piecemeal. The last significant review
occurred over 2002-2008, and was focused on the overhaul of the Human Tissue Act and
proposals for a donor register.
The Government wishes to increase organ donation rates. Recently, the Government has
invested in several initiatives to increase living donations for kidney transplants and for
Organ Donation New Zealand to provide increased support in intensive care units in relation
to deceased organ and tissue donation. From 2013 to 2014 there has been some indication
that both live and deceased organ donation rates are improving. Early 2015 data suggests
for deceased organ donation this is being sustained.
A number of countries have implemented initiatives to raise rates. In particular, Australia,
which has a number of similarities to New Zealand (including joint health professional bodies
for a number of specialities), implemented a successful reform programme following a
comprehensive review in 2008.
The Minister of Health and Associate Minister of Health have sought advice on what could
be done to further accelerate and sustain the recent increases in organ donation rates and
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achieve the step change required to bring New Zealand in line with similar countries. Any
such changes will need to occur in a way that is ethically, culturally and socially acceptable,
feasible and cost-effective in the New Zealand context.
Key Topics
Key topics that the Review will consider are likely to include:
 alignment of New Zealand’s clinical settings and training with international best practice,
particularly within emergency departments and intensive care units
 regional differences in clinical practices and donation rates
 lessons from other donation systems in New Zealand eg, tissue and blood donation
 leadership, coordination, and institutional arrangements
 health sector capacity and capability, and funding and performance arrangements
 New Zealand’s consent system, including the driver licencing system and practices for
gaining consent from family members
 the role of donor registers
 initiatives to raise awareness of organ donation, including the role of media and public
campaigns
 ethical, cultural, religious, and demographic factors within the New Zealand context
 opportunities to leverage or link with Australia’s systems, processes, and clinical training.
Scope
The following aspects have been identified as in and out of scope:
In Scope
Out of Scope
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solid organ donation rates following both brain
and circulatory death
linkages with living solid organ and tissue
policies and practices
the governance structure and institutional
arrangement of the donation and
transplantation system
the capacity and capability of the health system
to respond to increased donation and
transplantation rates.
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options for increasing tissue donation rates
(bone material, eye, tissue, skin and heart
valves) unless donated at the same time as
deceased solid organs
options for increasing live donation rates
(as there are a number of initiatives
underway that require time to embed and
be evaluated) aside from any opportunities
identified by existing initiatives
financial assistance for living donors (this is
already subject to a private member’s bill
that has been drawn, so will be considered
separately in a shorter timeframe)
organ transplantation waiting lists and
allocation processes
adequacy of general funding to district
health boards
review of the Human Tissue Act (although
legislative options might be signalled for
future work).
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Approach
Organ donation is a complex issue that generates high sector and public interest and strong
competing views about what is needed to improve donation rates.
The Review will be undertaken by the Ministry, with the support of an expert advisory group
chosen for their expertise in the issues under consideration. The Review will include:
 a literature review and review of existing documentation
 liaison with the Australian Organ and Tissue Authority
 targeted interviews
 issue-based workshops with clinicians, stakeholders, and consumers to identify issues
and possible solutions.
Review deliverables
The Ministry will provide a draft report on options for increasing deceased solid organ
donation and transplantation rates to the Minister of Health by 31 March 2016.
Next Steps
Some of the options identified, if approved by the Minister, may require further consultation
or development, particularly if they represent a significant change or cost.
There is strong sector and public interest in some topical issues associated with organ
donation. It is not possible to engage in full stakeholder and public consultation prior to
providing initial advice to the Minister in March 2016. However, wider consultation is likely to
occur after March, before decisions are taken.
Related work
The Review will connect with and share information where appropriate with other related
work.
 The Ministry’s advice on the Financial Assistance for Live Organ Donors Bill, a private
member’s bill, which proposes to increase financial reimbursement for live organ donors.
 The National Renal Transplant Service, established in 2014, which has a goal of
cumulatively increasing the number of live donor transplants by 10 in each of the next
four years.
 New funding in the 2014 Budget covering donor liaison co-ordinators and continuation of
the New Zealand Kidney Exchange programme to support this target.
 A pilot to increase live organ donation rates led by Counties Manukau District Health
Board. The formal evaluation of this work is due July 2016.
 The National Ethics Advisory Committee’s assessment of the Ethical Guidelines for
Eligibility Criteria and Allocation Protocols for Organ Transplantation from Deceased
Donors, which are currently being developed by the Australian National Health and
Medical Research Council (expected to be complete late 2015 / early 2016).
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