Transplantation is an effective and well-established treatment that can significantly benefit Australians facing illness, disability or premature death.

However, the demand for transplantation in Australia continues to exceed the supply of organs and some tissues. The wait for a transplant can extend to years for some types of organs and comes at a significant cost to those needing a transplant, their family and community, and the health system. It is for this reason that continued sustained growth in organ and tissue donation is required.

1.1 Embed organ and tissue donation as a routine part of end-of-life care

The potential for organ and tissue donation should be considered for all patients at the end of their life with planned care in intensive care units (ICUs) and emergency departments (EDs). These patients should be referred to donation specialists to assess the potential suitability for organ and tissue donation.

The Clinical Practice Improvement Program (CPIP) is a key initiative under the national program. It identifies the elements integral to achieving best-practice donation in ICUs and EDs. Since its implementation in 2014, the CPIP has continued to evolve.

CPIP Phase 3 identifies key performance indicators (KPIs) against which the performance of individual hospitals is monitored and reported.

In 2018–19 all jurisdictions agreed to implement CPIP Phase 3 in DonateLife hospitals. This phase includes routine referral of patients in the ICU or ED with planned end-of-life care to the DonateLife Agency or the DonateLife hospital team as a key performance metric. The DonateLife Audit was extended to capture routine referral data at each DonateLife hospital, including details on whether a patient was referred to the DonateLife Agency or a local donation specialist and reasons why this may not have occurred. This data has been incorporated in national, state and hospital level reports which are disseminated through the DonateLife Network to maximise the referral of all patients with the potential for organ and tissue donation.

We continued to fund the delivery of the Introductory Donation Awareness Training (IDAT) workshop nationally in 2018–19. This workshop plays an important role in educating a range of hospital-based health professionals about the best-practice donation model, including how to refer patients in the ICU or ED with planned end-of-life care. We are currently reviewing the content of the workshop to make sure it stays current and that we are meeting the changing needs of the sector.

To complement the IDAT workshop we commenced development of two new online modules in 2018–19. The first module focuses on educating staff on the routine referral of patients at planned end-of-life to the relevant DonateLife Agency or hospital donation specialist team. The second module explores the importance of eye and tissue donation and provides information on the processes involved. Both modules will be completed in 2019–20 and made widely available to hospital staff across Australia.

1.2 Ensure that donation processes occur according to best practice

All patients should receive excellent end-of-life care that meets their needs. This care, delivered with a focus on patient dignity and comfort, should be provided to all potential organ and tissue donors, while their care is simultaneously managed to optimise donation and transplantation outcomes. Collaboration is essential between treating staff providing end-of-life care and donation specialist staff managing the donor assessment and donation coordination process. This collaboration is necessary to obtain the best outcome for the patient, their family and possible recipients.

We continued to work with the DonateLife Network (DLN) to promote a positive donation culture within hospitals which is critical to the delivery of best-practice organ and tissue donation services. This included the ongoing delivery of CPIP Phase 3 and provision of data dashboards on the CPIP KPIs at both jurisdictional and hospital levels. This data is provided to hospital teams and senior executives, showing valuable information on donation performance and potential barriers to donation.

In 2018–19 we developed a National Competency Framework for DonateLife staff coordinating the donation process in Australia to ensure nationally consistent practice. The framework describes the skills and knowledge required to coordinate the donation process and provides guidance on requirements for training and assessment activities. The framework was approved by all states and territories and is being implemented by DonateLife Agencies as guidance for recruitment, education and training, and assessment of competency.

Throughout 2018–19 we continued to develop resources and education programs to optimise all aspects of potential organ and tissue donation. This included redesigning and updating the DonateLife Learning Site as an easy one-stop shop for documents, guidelines and resources to support our DLN staff to continually learn and keep up-to-date with the ever-changing donation and transplantation space. Redesign of the site included the creation of a new online orientation program that provides an overview of the national program and DLN role expectations. Completion of this orientation program is a KPI under CPIP Phase 3 and works as an introduction for new staff or a refresher for existing staff.

The revised site includes a new DonateLife podcast series which has been developed to explore multiple aspects of the donation and transplantation space through interviews with a variety of professionals. The main purpose of the podcast series is to inform staff about best-practice donation processes as well as provide different viewpoints and experiences of people who have worked in the area. The podcast series will continue to be expanded during 2019–20.

We also provided support for the College of Intensive Care Medicine of Australia and New Zealand to review their Brain Death and Organ Donation eLearning course. This course is compulsory for all college intensive care trained doctors and is also completed by DLN staff and others as a prerequisite for attendance at the core Family Donation Conversation (FDC) workshop.

We worked closely with the DLN and the tissue and transplantation sectors to develop national guidelines on the physical assessment of potential donors based on the available international and Australian evidence. The guidelines are designed to set a nationally consistent minimum standard for physical assessments and are expected to be finalised in September 2019.

We worked with the eye, tissue and organ donation sectors to develop a draft Donor Risk Assessment Interview questionnaire, known as the AUS DRAI. This questionnaire will replace the current medical-social donor history questionnaire that is completed with a potential donor’s next of kin to identify any risk factors that may impact the success of donation and transplantation. The AUS DRAI – supported by guidance documentation and user training – is scheduled for implementation in mid-2020.

In 2018–19 specific education on tissue donation was provided through the IDAT workshop in all states and territories. This training includes discussion of eye and tissue donation and associated processes. To complement this workshop, we started developing a new online learning module. This module will provide information on what is involved during the eye and tissue donation process for DLN and hospital-based staff. We expect to finalise and release this module in early 2019–20.

1.3 Increase the transplantation of organs from an expanded donor pool

Throughout 2018–19 we continued to collaborate and engage with the transplantation sector to optimise donation and transplantation processes and outcomes.

The Transplant Liaison Reference Group (TLRG), established in 2012, continued to provide advice on matters at the interface between the donation and transplantation sectors, and to provide a platform for us to collaborate with the transplantation sector on key initiatives. This group is increasingly a critical link between the sectors.

In March 2019 we hosted a clinical conference, Connecting donation and transplantation: a decade of growth and collaboration. The conference was well supported by nursing and medical staff from the organ and tissue donation and transplantation sectors as well as international guest speakers. Some of the presentation topics were around increasing donation and transplantation rates through the use of organs from an expanded donor pool. The ability to discuss and debate these topics in this forum was invaluable, with many new networks forged.

We continued to support the Transplantation Society of Australia and New Zealand (TSANZ) to explore ways to optimise transplantation outcomes for patients and ensure fairness and equity. In 2018–19 we provided support for TSANZ to establish two working groups with the specific task of reviewing the allocation principles and practices within Australian for renal and non-renal organs. Outcomes from these working groups are expected by 30 June 2020 and will inform future actions in this area.

We undertook a range of analysis and reporting activities in 2018–19 related to the use of donors from the expanded donor pool, including the production of reports stratified by donor age. We also developed an annual supplementary DonateLife Audit report which highlights the use of donors with co-morbidities, such as heart disease and hepatitis. In addition, we began collecting data from transplant units in order to facilitate analysis of transplant activity resulting from these donors.

1.4 Increase opportunities for living kidney donation through the Australian Paired Kidney Exchange Program

During 2018–19 we continued to support the Australian Paired Kidney Exchange (AKX) Program, based at the Royal Melbourne Hospital. This program aims to increase living donor kidney transplants by identifying matches for patients who are eligible for a kidney transplant and have a living donor who is willing to donate but is not a suitable match.

There were 238 living donors in 2018 – all kidney donors. These included 40 living kidney donors through the AKX Program, resulting in 286 Australians receiving a kidney transplant since the program began in 2010.

In April 2019 we supported the AKX Program to hold the AKX – eXpanding the possibilities workshop. This workshop was attended by clinicians involved in the AKX Program, with the day centering around updating clinicians on the success of the program and its future directions. The workshop was a valuable opportunity for attendees to provide feedback on the program.

Significant progress was made in 2018–19 to prepare for the beginning of the Australian and New Zealand Paired Kidney Exchange (ANZKX) Program – a collaboration between the AKX Program and the New Zealand Paired Kidney Exchange Program. This collaboration will result in a larger combined pool of incompatible donor/recipient pairs from which compatible matches can be identified. The outcome will be increased live donor kidney transplants in both countries.

The first ANZKX match is expected to occur in the last quarter of 2019. In preparation, we have worked closely with the New Zealand Ministry of Health, the relevant Australian Government departments responsible for border policy and operations, and transport companies. We want to ensure all the necessary regulatory and logistical requirements are met and the transportation of kidneys between the two countries is successful.