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Annual performance statement

Statement of preparation

We, the OTA Board, as the accountable authority of the Organ and Tissue Authority (OTA), present the 2018–19 performance statement of the OTA, as required under section 39(1)(a) of the Public Governance, Performance and Accountability Act 2013 (PGPA Act). In our opinion, this Annual Performance Statement accurately presents the OTA’s performance and complies with subsection 39(2) of the PGPA Act.

The statement below reports our performance against the planned performance criteria set out in the 2018–19 Health Portfolio Budget Statements and our 2018–19 Corporate Plan.

Yours faithfully

Signed by

Dr Mal Washer

Chair, OTA Board

9 July 2019

Our purpose, performance measures and outcomes

Our purpose

Our purpose is to save and improve the lives of more Australians through optimising potential organ and tissue donation for transplantation, through a nationally coordinated and consistent approach and system.

Our results

In 2018 Australia achieved a record number of organ transplant recipients as a result of more donors and their families agreeing to donate. The lives of 1,782 Australians were saved or improved through transplantation due to the generosity of 554 deceased and 238 living organ donors and their families. In addition, over 10,500 Australians benefited from eye and tissue donation.

Quantitative measures1

Increasing the capability and capacity within the health system to maximise donation and transplantation rates

Performance criteria

Target 2018

2018 outcomes

Result against performance criterion

Deceased organ donors per million population (dpmp)

25 dpmp

22.2 dpmp

Not met

While the national donation rate target was not met, donation rates in three jurisdictions – Victoria, Tasmania and the Australian Capital Territory – exceeded our 2018 target.

Rate of consent to organ donation

70%

64%

Not met

While the national consent rate target was not met, consent rates in two jurisdictions – South Australia and the Australian Capital Territory – exceeded the target. There was a 5% increase in the national consent rate over 2017.

Raising community awareness and stakeholder engagement across Australia to promote organ and tissue donation

Performance criteria

Target 2018

2018 outcomes

Result against performance criterion

Through community education and awareness, increase the number of registrations on the Australian Organ Donor Register (AODR)

10%

12%

Met

In 2018 there were 203,783 new registrations on the AODR. This represents a 12% increase over 2017, exceeding our 2018 target.

Qualitative measures

Increasing the capability and capacity within the health system to maximise donation and transplantation rates

Performance criteria

Result against performance criterion

Implement Phase 3 of the Clinical Practice Improvement Program (CPIP) in all DonateLife hospitals. The program identifies elements of clinical strategic focus with associated key performance indicators that are integral to achieving best practice organ and tissue donation in intensive care units and emergency departments.

Met

CPIP Phase 3 was developed in consultation with the DonateLife Network in 2017–18.

Under the 2018–2020 funding agreements, states and territories agreed to implement CPIP Phase 3 in all DonateLife hospitals. Implementation commenced in January 2018 and continued throughout 2018–19.

Expand and enhance the performance measurement and reporting framework for the donation and transplantation sectors to inform nationally consistent evidence-based best practice.

Met

The collection, analysis and reporting of data to monitor clinical practice change has continued as a key area of focus for the OTA in 2018–19.

As an ongoing process, we enhanced our suite of visual dashboards to present key donation metrics to DonateLife Network and hospital staff, and state and territory health departments.

The OTA dashboard reports were also enhanced to include clinical process metrics identified under CPIP Phase 3. Subsequent analysis informs the ongoing development of the program. We will report the first full year of data in 2019.

Collaborate with states and territories to ensure the health system has the capacity and capability to support future growth and sustainability of donation and transplantation outcomes.

Met

In April 2018 the Council of Australian Governments Health Council agreed that the Commonwealth Government undertake a review of the organ donation, retrieval and transplantation system in collaboration with states and territories.

In 2018–19 we worked with the Commonwealth Department of Health and our jurisdictional health representatives to inform the review. This included the provision of data to demonstrate the complexities of the system and the pressures on the retrieval and transplantation sector resulting from significant growth in donation activity.

The review will inform the development of a long-term strategy for the delivery of organ retrieval and transplantation services which will build on the Australian Government’s national program for increasing organ donation.

Deliver, in partnership with the Australian Red Cross Blood Service, the Australian organ matching system, known as OrganMatch by 30 June 2019 to maximise equity of access and clinical outcomes for transplant recipients in Australia.

Met

Throughout 2018–19 we continued to partner with the Australian Red Cross Blood Service, our state tissue typing laboratories and the transplantation sector to implement the new state-of-the-art national organ matching system – OrganMatch – to replace the ageing National Organ Matching System (NOMS).

OrganMatch went live on 2 April 2019.

Raising community awareness and stakeholder engagement across Australia to promote organ and tissue donation

Performance criteria

Result against performance criterion

Continue to educate the Australian community about the importance of registering on the Australian Organ Donor Register and sharing this decision with their family. This includes working with our national community, corporate and sporting partners to promote and normalise organ and tissue donation through their engagement with the community.

Met

Throughout 2018–19 we undertook a range of community education and awareness-raising activities. Key initiatives included DonateLife Week, DonateLife Thank You Day, Community Awareness Grants, Jersey Day, and partnerships with the Australian Football League, Football Federation Australia and Tonic Health Media.

We continued to provide factual information and promotional resources to partners across the donation and transplantation sectors and the broader community to foster informed discussion and decision-making about organ and tissue donation. These materials included activity reports, factsheets, and campaign supporter kits, videos and social media resources.

Analysis of our performance in 2018-19 against our purpose

Transplantation is an effective and well-established treatment that can save lives and significantly improve the quality of life of many Australians waiting for a transplant and the families who care for them. Improving access to transplantation relies on increasing the donation of organs and tissues.

Our major challenge is the rarity of organ donation. Only around 2% of deaths in hospital occur in a way that organ donation for transplantation is medically possible. In these cases, end-of-life care is provided to the patient in an intensive care unit or sometimes an emergency department. Maximising donation outcomes from this small donor pool requires optimal clinical practice in end-of-life care in hospital and a very high level of family and community awareness and support for donation.

Many more people can become eye and tissue donors as these can be donated following death in broader circumstances, including outside of hospital, and, unlike organs, tissue can be stored for varying periods of time.

In 2018 the lives of 1,544 Australians were saved or improved through transplantation due to the generosity of 554 deceased organ donors and their families. In addition, 238 Australians received an organ from a living donor and 10,500 Australians benefited from eye and tissue donation.

The record number of organ transplant recipients from deceased donation was largely the result of more donors and their families agreeing to donate. Our national consent rate in 2018 (quantitative performance criterion 2) was 64%, increasing from 59% in 2017. While our 2018 national consent rate was below our target of 70%, the increase over 2017 was encouraging. Also, two jurisdictions – the Australian Capital Territory and South Australia – achieved consent rates above the national target (75% and 73% respectively). This suggests there may be potential for other jurisdictions to improve their consent rate.

Increasing the capability and capacity within the health system to maximise donation and transplantation rates

In 2018 the number of deceased organ donors translated into a national organ donation rate of 22.2 donors per million population (dpmp), up from 20.7 dpmp in 2017.

While the national donation rate was below our 2018 target of 25 dpmp, there remains variation across states and territories. Three jurisdictions – the Australian Capital Territory, Victoria and Tasmania – exceeded the national target with donation rates of 32.4, 29.9 and 26.5 dpmp respectively.

The 2018 outcomes show that Australia’s national program to increase organ and tissue donation for transplantation is continuing to deliver strong results. Since the program started in 2009, 4,018 organ donors and their families have given over 11,000 Australians a second chance at life through transplantation. During the past decade, we have more than doubled the number of deceased organ donors (124% increase) and improved the lives of nearly twice the number of people through transplantation (93% increase).

In 2018–19 we continued to focus on optimising the identification of potential donors and increasing consent to donation in the hospital setting through the implementation of the Clinical Practice Improvement Program (CPIP) Phase 3 in all DonateLife hospitals (qualitative performance criterion 1). The CPIP provides guidance to DonateLife Network clinical staff on achieving best practice organ and tissue donation in intensive care units and emergency departments when the rare opportunity for donation occurs.

The key performance indicators (KPIs) for each element of clinical strategic focus identified by the program were monitored and reported through jurisdictional and hospital dashboards produced by the OTA and six-monthly progress reports completed by all states and territories.

There is substantial variation in jurisdictional and hospital level progress against the KPIs. This will be an ongoing focus for the OTA and the DonateLife Network leadership team during 2019–20.

The collection, analysis and reporting of data to inform, assess and monitor clinical practice continues to be a key area of focus for us (qualitative performance criterion 2). In 2017–18 we developed a suite of visual dashboards to present key donation metrics to DonateLife Network and hospital staff, and state and territory health departments, to inform and drive clinical practice improvement. Throughout 2018–19 we evolved the dashboards to include clinical process metrics identified under CPIP Phase 3. We will report the first full year of data in 2019, and subsequent analysis will inform the ongoing development of the program.

In 2019–20 we will work with the states and territories and key stakeholders to implement the new national Data Governance Framework negotiated in 2018–19. This framework, underpinned by the Data Governance and Privacy Principles, provides agreement on the governance of data to ensure compliance with relevant state and territory legislation. The framework also creates a foundation for establishing a national de-identified dataset to further inform clinical practice improvement.

There has been steady growth in organ donation activity since the national program started in 2009. By 2017 it became apparent that this growth was placing significant pressure on downstream resources and workforce planning for organ retrieval and transplantation services provided by state and territory governments.

In April 2018 the Council of Australian Governments (COAG) Health Council considered the issue of pressure on downstream services from an increased organ donation rate. The council agreed to the Australian Government’s proposal to undertake a review of the Australian organ donation, retrieval and transplantation system, in consultation with states and territories. The review aims to identify areas within our health system which could compromise the future growth and sustainability of organ donation and transplantation.

The Commonwealth Department of Health engaged Ernst & Young to undertake the first phase of the review. The review considered current systems, practices and processes across the entire system, with a key focus on the retrieval and transplantation services. This included equity of access for all Australians, wait-listing criteria, as well as organ offer, allocation and acceptance processes.

Phase 2 of the review will involve the development of a future national strategy for organ donation, retrieval and transplantation for agreement by all Australian Health Ministers. We will play an important role in informing the development of the strategy in 2019–20.

In 2018–19 the Commonwealth Department of Health also led the development of a national policy framework for the eye and tissue sector, in partnership with states and territories and the OTA. The framework responds to the key issues raised in the PricewaterhouseCoopers Analysis of the Australian tissue sector report, commissioned by the Australian Government and released in June 2017. The draft National Policy Framework for the Eye and Tissue Sector will be presented to the COAG Health Council for consideration later in 2019.

Transplantation practices can influence donation rates and so we work closely with the transplantation sector to ensure appropriate systems and policies are in place to optimally use the organs available for transplantation. In 2018–19 this work included the development of a new national system for organ allocation, known as OrganMatch. We continued our partnership with the Australian Red Cross Blood Service and collaborated with the transplantation sector to successfully deliver OrganMatch on 2 April 2019.

OrganMatch is providing the platform to drive clinical best practice for wait-listing, organ offer, immunological matching, and allocation. We will work closely with the sector to seek feedback on OrganMatch and continue our collaboration to optimise the functionality of the system through a staged roll out of key system enhancements.

Raising community awareness and stakeholder engagement across Australia to promote organ and tissue donation

Registration and family discussion make a major difference when families are faced with making a decision about donation in hospital. Nine in 10 families agree to donation when their loved one is a registered donor and seven in 10 when their loved one was not registered but the family knew they wanted to be a donor.

In 2018–19 we continued to deliver the community awareness and education program, encouraging Australians to be a registered donor on the AODR and to tell their family and friends they want to be a donor. This included our two key annual events: DonateLife Week in August 2018 and DonateLife Thank You Day in November 2018. For these events we worked with our corporate, community and sporting partners to promote awareness and acceptance of organ and tissue donation through their engagement with the community.

In 2018 there were 203,783 new registrations. This represents a 12% increase which is above our 2018 target of 10%.

Through the combined efforts of the clinical and community sectors, significant progress has been made since the national program started in 2009. Despite this progress, at any one time there are around 1,400 Australians on the organ transplant waiting list, with a further 11,000 patients on dialysis – many of whom might benefit from kidney transplantation. This comes at a significant cost to those needing a transplant, their families and communities, and the health care system. Clearly, there is still more that can be done.

Footnotes

  1. Quantitative performance data is reported on a calendar year basis to align with Australian and international donation and transplantation performance reporting