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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 2019–20 performance statement of the OTA, as required under section 39(1)(a) of the Public Governance, Performance and Accountability Act 2013 (the 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 2019–20 Health Portfolio Budget Statements and our 2019–20 Corporate Plan.

Yours faithfully

Dr Mal Washer

Chair, OTA Board

28 September 2020

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 issue donation for transplantation, through a nationally coordinated and consistent approach and system

Our results

In 2019 the lives of 1,683 Australians were saved or improved through transplantation due to the generosity f 548 deceased and 239 living organ donors and their families. In addition, over 12,000 Australians benefited from eye and tissue donation

Quantitative measures1

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

Performance criteria

Target 2019

2019 outcomes

Results against performance criterion

Deceased organ donors per million population (dpmp)

25 dpmp

21.6 dpmp

Not met

While the national donation rate target was not met, donation rates in two jurisdictions – Tasmania (33.7 dpmp) and South Australia (29.7 dpmp) – exceeded our 2019 target. Victoria was only slightly under the national target at 24.6 dpmp.

Rate of consent to organ donation

70%

62%

Not met

While the national consent rate target was not met, consent rates in one jurisdiction – South Australia – exceeded the target. The national consent rate was slightly lower than in 2018 (64%).

Reflecting improved clinical practice, a record number of families agreed to donation in 2019; however, a substantial number did not progress to donation primarily for medical and logistical reasons.

Donation specialist involved in family donation conversations

70%

74%

Met

Under the 2018–2020 funding agreements, states and territories agreed to implement the Clinical Practice Improvement Program (CPIP) Phase 3 in all DonateLife hospitals.

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.

A key element of CPIP Phase 3 is having a donation specialist nurse or doctor discuss the option of donation with families in the hospital.

In 2019 the proportion of cases where donation was raised by staff and a donation specialist was involved in discussions with the family increased from 63% in 2018 to 74%, exceeding our target.

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

Performance criteria

Target 2019

2019 outcomes

Result against performance criterion

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

10%

9%

Not met

In 2019 we continued to raise community awareness of organ and tissue donation and encourage Australians to register on the AODR and let their family know they want to be a donor. There were 221,641 new registrations on the AODR in 2019, a 9% increase over the number of new registrations in 2018.

Qualitative measures

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

Performance criteria

Result against performance criterion

Work with the donation sector to develop and deliver professional education programs and resources that support best practice organ and tissue donation in intensive care units and emergency departments

Met

We have continued to evolve professional education programs and resources to drive clinical practice change.

The Introductory Donation Awareness Training workshop was updated to maintain currency and ensure the changing needs of the sector are being met. This workshop is a key strategy in educating a wider range of hospital-based health professionals, particularly in intensive care units (ICUs) and emergency departments (EDs), about donation pathways, referral processes and the donation process.

To complement the Introductory Donation Awareness Training workshop, eLearning modules were developed and made available nationally to hospital staff working in ICUs and EDs. These modules focused on the routine referral of patients with planned end-of-life care to DonateLife and eye and tissue donation.

Monitoring of the implementation of the elements of the Best practice guideline for offering organ and tissue donation in Australia continued through the Clinical Practice Improvement Program (CPIP). The CPIP is the agreed performance framework for the delivery of clinical donation services. It identifies seven elements and reportable key performance indicators fundamental to achieving best practice organ and tissue donation in the ICU and ED environments.

Work with the donation and transplant sector to evolve the performance measurement and reporting framework to inform nationally consistent and evidence-based clinical 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 2019–20.

The metrics, dashboards, reports and the data collections that underpin the reporting framework were reviewed and enhanced during 2019–20 to keep pace with the evolving clinical performance monitoring needs.

A Data Governance Committee was established in July 2019 to consider privacy and governance issues relating to data sharing and release from relevant data assets. The committee is working to expand the data available for analysis and reporting to improve clinical practice and donation and transplant outcomes.

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 2019–20 we continued to work with the Commonwealth Department of Health and jurisdictional health representatives on the Review of Australia’s organ donation, retrieval and transplantation system.

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

Performance criteria

Result against performance criterion

Work with community organisations and partners to raise public awareness of organ and tissue donation and the importance of registering on the Australian Organ Donor Register (AODR) and talking about donation

Met

Throughout 2019–20, in collaboration with the DonateLife Network and our community partners, we continued to undertake a range of community education and awareness-raising activities. Key initiatives included DonateLife Week, DonateLife Thank You Day, Community Awareness Grants, Jersey Day, Gift of Life DonateLife Walk 2019, and Saffron Day, and partnerships with the Australian Football League, Football Federation Australia, Melbourne Storm 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 encourage informed discussion and decision-making about organ and tissue donation. These materials included activity reports, factsheets, campaign supporter kits, videos and social media resources.

Analysis of our performance in 2019-20 against our purpose

Transplantation is an effective and well-established treatment that can save lives and significantly improve the lives 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.

Organ donation is a rare event – only around 2% of deaths in hospital occur in a way that organ donation is medically possible. 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. Also, unlike organs, tissue can be stored for varying periods of time.

In 2019, thanks to the generosity of 548 deceased organ donors and their families, and 239 living donors, the lives of 1,683 Australians were saved or improved through transplantation. A further 12,000 Australians benefited from eye and tissue transplantation made possible by generous eye and tissue donors and their families.

Our national consent rate in 2019 (quantitative performance criterion 2) was 62%, decreasing slightly from 64% in 2018. The 2019 national consent rate was below our target of 70%. One jurisdiction – South Australia – achieved a 74% consent rate which is above the national target. South Australia’s result demonstrates the importance of registration, with 70% of the population registered on the AODR contributing to the highest jurisdictional consent rate in 2019. South Australia is the only state where individuals can register to be a donor through a drivers licence system.

Within the current legislative consent framework, the OTA Board recommends that all Australians should be able to register to be a donor on the AODR when they apply for – or renew – their drivers licence.

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

In 2019 the number of deceased organ donors translated into a national organ donation rate of 21.6 donors per million population (dpmp), slightly lower than 22.2 dpmp in 2018.

While the national donation rate was below the 2019 target of 25 dpmp (quantitative performance criterion 1), there remains variation across states and territories. Tasmania (33.7 dpmp) and South Australia (29.7dpmp) exceeded our 2019 target, and Victoria was only slightly under the national target at 24.6 dpmp.

Australia’s national program to increase organ and tissue donation for transplantation has shown an overall trend of growth. Since the program started in 2009, we have more than doubled the number of deceased organ donors (122% increase) and improved the lives of nearly twice the number of people through transplantation (81% increase) thanks to the generosity of 4,566 organ donors and their families.

In 2019–20 we continued to focus on optimising the identification of potential donors and increasing consent to donation in the hospital setting. We achieved this through the implementation of the Clinical Practice Improvement Program (CPIP) Phase 3 in our network of
95 DonateLife hospitals (qualitative performance criterion 1) across Australia.

As a result, in 2019 more patients were referred for consideration as potential organ donors, more families were offered the opportunity for their loved one to be a donor, and more families agreed to donation. However, some of these patients did not become donors for medical and logistical reasons. 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 for each element of clinical strategic focus identified by the program were monitored and reported through jurisdictional and hospital dashboards produced by the OTA. In addition, six-monthly progress reports were completed by all states and territories and their DonateLife Agency.

For the first time end of year outcome reports were provided for the Minister to provide to all jurisdictional Health Ministers. This identified areas for improvement.

The collection, analysis and reporting of data to inform, assess and monitor clinical practice has continued to be a key area of focus for us in 2019–20 (qualitative performance criterion 2).

The metrics, dashboards, reports and the data collections that underpin the reporting framework were reviewed and enhanced during 2019–20 to keep pace with the evolving clinical performance monitoring needs.

We established a Data Governance Committee in July 2019 to consider privacy and governance issues relating to data sharing and release from relevant data assets. The committee is working to expand the data available for analysis and reporting to improve clinical practice and donation and transplant outcomes.

Transplantation practices also influence donation rates, 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 2019 we partnered with the sector to deliver OrganMatch, Australia’s new state-of-the-art
wait-listing and organ matching system. OrganMatch is accessed by over 650 clinicians and transplant coordinators, from 46 renal, heart, lung and liver and pancreas transplant units, and 150 scientists across Australia. Through its clinical portal, OrganMatch also gives clinicians access to real-time patient results and reports as well as matching and transplant information for their patients.

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

Registration and family knowledge 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 collaboration with the DonateLife Network, in 2019–20 we continued to deliver the community awareness and education program, encouraging and supporting Australians to be a registered donor on the AODR and to tell their family and friends they want to be a donor. Our two key annual events to promote awareness and acknowledge the generosity of the community were DonateLife Week (in July 2019) and DonateLife Thank You Day (in November 2019). These events would not be possible without the support of the DonateLife Network, and our community, corporate and sporting partners, in promoting awareness and acceptance of organ and tissue donation through their engagement with the community.

In 2019 we provided community awareness funding to assist organisations with projects or activities that contribute to increasing Australians’ knowledge of the benefits of donation and transplantation and encourage family discussion and online registration on the Australian Organ Donor Register.

In 2019 there were 221,641 new registrations on the AODR. This represents a 9% increase on the number of new registrations in 2018, slightly below our target of 10%.

The collective efforts of the clinical and community sectors have delivered significant progress for the national program since it began in 2009. Despite this progress, there are currently around 1,700 Australians on organ transplant waiting lists, with a further 12,000 patients on dialysis – many of whom might benefit from kidney transplantation. Globally, there will never be enough organs to meet the demand for those needing a transplant. That is why it is critical that we do all we can to educate the public and normalise conversations about donation.

Footnotes

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