Analysis of our performance in 2020-21 against our purpose
Optimise donation opportunities for transplantation
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 number of organ and tissue donations.
Very few people have the opportunity to become an organ donor. 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 during end-of-life care in hospital and a very high level of family and community awareness and support for donation.
Many more people have the opportunity to become eye and tissue donors as these can be donated following death in broader circumstances, including death outside of hospital. Also, unlike organs, tissue can be stored for varying periods of time.
2020 was a challenging year with the emergence of COVID-19 in Australia. The pandemic had a direct impact on the national program and resulted in a decrease in donation and transplantation outcomes from 2019. Despite these challenges, 1,270 Australian lives were saved through an organ transplant, due to the generosity of 463 deceased organ donors and their families during 2020. This was a 12% decrease in the number of people receiving a transplant and a 16% decrease in the number of donors compared to 2019.
In 2020 the number of deceased organ donors translated into a national organ donation rate (quantitative performance criterion 1) of 18 donors per million population (dpmp), down from 21.6 dpmp in 2019.
Additional challenges were faced by transplant recipients and patients on waiting lists, families of potential donors, and health professionals working across the sector. The DonateLife teams worked hard with transplant teams to navigate these challenges and logistics including with COVID-19 restrictions, flight reductions and border closures, so that patients received the best possible outcomes.
At the start of the pandemic, the transplant sector took precautionary steps and suspended adult kidney and pancreas transplant programs from late March through to mid-May 2020. This was due to uncertainty at the time about the potential impact of COVID-19 on hospitals, and to limit vulnerable transplant patients being exposed to the virus.
Additionally, suspension of elective surgery in late March impacted living kidney transplantation in Australia and travel restrictions (domestic and international) lead to the suspension of the ANZKX Program.
Provide specialist support for families involved in the donation process
Providing high quality care and support for donor families throughout the donation process is a core strategy for the OTA. In 2020–21 a revision of the Managing correspondence between transplant recipients and donor families National StandardOperating Procedure was conducted, with a focus on timely, respectful and accountable processes. To complement the revised National Standard Operating Procedure, an update to the associated Correspondence Guidelines was completed, to provide consistent information and support to donor families.
There were also COVID-19 impacts on the ability of OTA hospital-based staff to provide optimal support to families considering organ donation, with hospital restrictions requiring intimate discussions to happen via tele- or videoconferencing rather than face-to-face conversations.
Increase consent through registration and family discussion
Our national consent rate was impacted by COVID-19 restrictions and dropped to 58% in 2020. Some families who experienced the death of a loved one during this time were faced with restricted hospital access with discussions with clinicians occurring remotely, including conversations about end-of-life and donation. While the national consent target was not met and despite these difficulties, 680 families agreed to donation in 2020.
There was also a decrease in the number of new registrations on the Australian Organ Donor Register (AODR). Due to social distancing restrictions and the inability to conduct large group gatherings, there were significantly fewer community events to drive registrations in 2020, resulting in a 16% decrease in AODR registrations compared with 2019. Due to COVID-19 restrictions, the 2020 DonateLife Week campaign, from 26 July to 2 August, was delivered as a fully digital campaign.
In 2020 the OTA provided community awareness funding to assist organisations with digital projects or activities that contributed to improving Australians’ knowledge of the benefits of donation and transplantation, while also encouraging family discussion and online registration on the AODR.
Enhance systems and processes to support donation and transplantation
A crucial element of achieving best practice donation services across our intensive care and emergency department environments is the Clinical Practice Improvement Program. In July 2020, we implemented phase four of the program, introducing best practice approaches for organ and tissue donation including those utilised in the United Kingdom, Canada, the United States and Spain. These initiatives embed the routine referral of all patients approaching end-of-life in intensive care units and emergency departments to DonateLife specialist staff to ensure appropriate and timely advice on donor potential and suitability.
We have also promoted, as best practice, the involvement of a Donation Specialist Nurse in all family donation conversations as experience and data continue to highlight the benefit of this approach with families being fully informed and supported and more saying yes to donation.
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 agencies.
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 2020 with ongoing evolution of the DonateLife Audit, a retrospective audit of Emergency Department and Intensive Care Unit deaths across the DonateLife Network.
The metrics, dashboards, reports and the data collections that underpin the reporting framework also continued to evolve during 2020 to keep pace with the evolving clinical performance monitoring needs.
Transplantation practices continue to influence donation rates, so the OTA works closely with the transplantation sector to ensure appropriate systems and policies are in place to optimally use the organs available for transplantation.
Our performance measures and results
In 2020 the lives of 1,452 Australians were saved or improved through transplantation due to the generosity of 463 deceased and 182 living organ donors and their families. In addition, over 13,000 Australians benefited from eye and tissue donation.
Table 3 Quantitative performance measures
Increase the donation rate of deceased organ donors per million population (dpmp) through delivery of a nationally coordinated and consistent approach
The national donation rate dropped in 2020 due to the emergence of COVID-19 in Australia. There was a 16% decrease in the number of donors compared to 2019. In 2020 1,270 Australians received transplants from 463 deceased organ donors.
While the national donation rate target was not met, the donation rate in South Australia (26.0 dpmp) exceeded the 2020 target, while Tasmania (24.0 dpmp) was only slightly under the national target.
Increase the rate of consent to organ donation through clinical best practice and community engagement
The national consent rate target was not met. Tasmania (74%) was the exception, which exceeded the 2020 target. The methodology for reporting consent rates has changed for 2020 to more accurately reflect all donation discussions with families where consent is sought. The 2019 consent rate using this methodology was 59%. 680 families agreed to donation in 2020.
Through clinical practice improvement, increase family donation conversations involving a donation specialist when the opportunity for donation is raised by staff
While the national target was not met, the proportion of cases where donation was raised by staff and a donation specialist was involved in the conversation with the family increased from 70% in 2019 to 76 in 2020.
Under current funding agreements, states and territories agreed to implement the Clinical Practice Improvement Program (CPIP) Phase 4 in all DonateLife hospitals.
A key element of CPIP Phase 4 is having a Donation Specialist Nurse discuss the option of donation with families in the hospital.
Through community awareness and education, increase registrations on the Australian Organ Donor Register (AODR)
10% increase in new registrations on the AODR from 2019
In 2020 there were 186,656 new registrations on the AODR. This represents 16% fewer registrations than 2019 (221,641), largely as a result of significantly fewer community events driving registrations due to COVID-19 restrictions.
In 2020 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.
Quantitative performance data is reported in a calendar year basis to align with Australian and international donation and transplantation performance reporting.
Table 4 Qualitative performance measures
Work with the donation sector to further evolve the Clinical Practice Improvement Program (CPIP) to deliver best practice organ and tissue donation in intensive care units and emergency departments
Phase 4 of the CPIP was implemented in July 2020 following consultation with jurisdictions and the donation sector. CPIP Phase 4 further embeds the routine referral of all patients with planned end-of-life care in intensive care units and emergency departments to DonateLife Agency/hospital donation specialist staff and the role of the Donation Specialist Nurse in the family donation conversation.
Work with the donation sector to deliver professional education programs and resources to support the provision of high-quality care to donor families through the donation process
We have continued to evolve and deliver professional education programs and resources to drive clinical best practice.
The Best Practice Guideline for Offering Organ and Tissue Donation in Australia (the Guideline) was updated in April 2021 to continue to provide the best practice approach for discussing donation with families of potential organ and tissue donors. The Guideline is focused on supporting families in making an informed decision about donation.
The two-day core family donation conversation workshop has been updated to align with the revised Guideline. The revised workshop has a particular focus on the important role of the Donation Specialis Nurse in donation conversations and reinforces the importance of fully informed donation conversations.
To complement the two-day and one-day family donation conversation workshops, we launched the DonateLife Coaching Program in March 2021. This program is available for donation specialists to participate in one-on-one coaching sessions and practice scenarios with real- time feedback from the coach. The goal of the program is to ensure donation specialists continue to provide the best possible care and support to each family and to enable the family to make a fully informed decision about donation.
Collaborate with states and territories to improve the capacity and capability of the organ donation, retrieval and transplantation system
The OTA continues to work with the Commonwealth Department of Health and jurisdictional health representatives on the development of key frameworks to provide the overarching future direction and identify actions that can be delivered in the shorter term within current resources. These include actions that will inform the development of a national strategy for the Australian organ donation, retrieval and transplantation system.
Work with the donation and transplants sector to support OrganMatch and optimise functionality to drive clinical practice improvement
The OTA continues to support the donation and transplantation sector and work collaboratively with the Tissue Typing Laboratory sector through the further development of OrganMatch functionality. The clinical portal (now called the transplantation portal) has been delivered and is now evolving to include new functionality and additional data fields for patients on the waitlist for all organs. This has facilitated enhanced reporting and functionality for transplant units to manage their patients waiting for a life-saving/transforming transplant, and enhanced patient outcomes. As at 30 June 2021, there are more than 400 active clinical users of OrganMatch across the laboratory, clinical and Australian and New Zealand Paired Kidney Exchange (ANZKX) portals.
Collaborate with states and territories to develop a national donation and transplantation de-identified data collection to inform clinical practice improvement across the organ donation, retrieval and transplantation system
The expansion of national de-identified data collections for donation and transplantation continue to progress through agreements between the OTA, jurisdictions, and data asset hosts for the use and sharing of data. These agreements have facilitated the use of national de-identified data to inform clinical practice improvement across the organ donation sector.
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
Throughout 2020–21, in collaboration with the DonateLife Network and community organisations, the OTA continued to undertake a range of community education and awareness-raising activities. Key initiatives included digitising many of the DonateLife Week 2020 events and activities that could not happen in person due to COVID-19 restrictions. Engagements included DonateLife Thank You Day, Community Awareness Grants, Jersey Day, Gift of Life, and Saffron Day. The new 2020–21 Budget measure resulted in OTA partnerships with the Australian Professional Leagues, Sunshine Lightning Netball, Western Bulldogs AFL, Convenience Advertising, Melbourne Storm NRL, NewsCorp Australia, Tonic Health Media and pixel42. OTA also initiated a website upgrade. Preparation for DonateLife Week 2021 began with a new focus on under-represented target markets in youth, Culturally and Linguistically Diverse and Indigenous sectors.
The OTA 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.