The 2019–23 Strategic Plan, Progressing Australian organ and tissue donation and transplantation to 2023, was developed in consultation with the DonateLife Network leadership team and state and territory health department representatives. Throughout 2019–20 this plan supported the continued, collaborative and consistent approach to the delivery of organ and tissue donation services across Australia.
The work of the OTA and the DonateLife Network was managed according to this strategic plan which set out the key objectives, strategies and actions to be undertaken over the four years from 2019–20 to 2022–23 to support our purpose: to save and improve the lives of more Australians through optimising potential organ and tissue donation for transplantation.
The 2019–23 Strategic Plan identified 10 key focus areas for the year ahead, and this section reports on our progress against each of these.
Focus Area 1: Embed routine referral of patients at planned end-of-life in our DonateLife Network hospitals
We continue to monitor the implementation of the Clinical Practice Improvement Program (CPIP) to achieve best practice donation services across Australia. An integral part of CPIP is the routine referral of all patients with planned end-of-life care in intensive care units (ICUs) and emergency departments (EDs) to DonateLife so the potential for organ and tissue donation can be considered. This ensures donation opportunities are not missed and enables DonateLife to determine suitability for organ donation with additional expert donation and transplantation medical advice. We started the review of CPIP in 2019–20 to further evolve and embed the Best practice guideline for offering organ and tissue donation in Australia. This was revised in 2019–20 and will be finalised in 2020–21 following consultation with relevant professional stakeholders.
In 2019–20 we finalised and released new eLearning modules on ‘Routine referral for organ and tissue donation’ and ‘Eye and tissue donation’ to the DonateLife Network and hospitals Australia-wide. These modules are designed to increase awareness of organ and tissue donation and debunk myths that may prevent timely referral to DonateLife of patients with planned end-of-life care in ICU and ED.
We began the delivery of the updated Introductory Donation Awareness Training workshop in 2019–20. This workshop is targeted to hospital-based health professionals, with the revised workshop having a stronger focus on the importance of routine referral and the positive benefits of transplantation.
We continue to evolve dashboard reporting to drive clinical best practice across DonateLife hospitals through the collection of data to monitor, assess and inform the national program. The DonateLife hospital reporting framework includes metrics on referral of patients at planned end-of-life. These dashboards and reports are provided regularly to the DonateLife Network and relevant state and territory health departments to inform discussions and assist with monitoring compliance with CPIP indicators. The metrics, dashboards, reports and the data collections that underpin this framework were reviewed and enhanced during 2019–20 to keep pace with the evolving clinical performance monitoring needs.
Focus Area 2: Continue to enhance the DonateLife hospital reporting framework to monitor performance and clinical processes
The DonateLife hospital reporting framework includes a variety of dashboards and reports that are provided regularly to the DonateLife Network and relevant state and territory departments to inform discussions and assist with monitoring compliance with CPIP indicators. The metrics, dashboards, reports and data collections that underpin this framework were reviewed and enhanced during 2019–20 to keep pace with the evolving clinical performance monitoring needs. Major enhancements to improve the quality and timeliness of data from the DonateLife Audit – the primary data collection tool for monitoring clinical processes – were rolled out across all DonateLife hospitals throughout this .
Focus Area 3: Continue to develop the DonateLife Learning Site
Throughout 2019–20 we continued to develop resources and education programs to optimise all aspects of potential organ and tissue donation. This includes expanding on the updates that were delivered to the DonateLife Learning Site in 2018–19 by releasing new eLearning modules to the DonateLife network. These modules – ‘Routine referral for organ and tissue donation’ and ‘Eye and tissue donation’ – aim to inform staff about the best practice donation processes.
We continued to produce episodes of the DonateLife podcast series on the Learning Site. This series explores the multifaceted aspects of the donation and transplantation space through interviews with a variety of professionals. Examples of podcast episodes include family communication, paediatric donation and insights from the National Donor Family Study. The site is further being used to facilitate the communication of important data analysis and information within the DonateLife teams.
We continued to fund the delivery of face-to-face core and practical Family Donation Conversation (FDC) workshops in all states and territories, running nine core and 10 practical FDC workshops which trained over 321 health professionals in 2019–20. Workshop attendees are provided with tools and techniques to support families to make an informed choice about donation. With the outbreak of COVID-19, planned workshops from mid-March onwards were postponed due to social distancing and travel restrictions. We have since been working to deliver smaller FDC workshops to meet COVID-safe requirements and we are exploring virtual delivery options for the education program.
Numerous resources focusing on family donation conversations are also available on the DonateLife Learning Site, to support the training. A review of the core FDC workshop began in 2019–20 to ensure currency and to reflect the elements of the revised Best practice guideline for offering organ and tissue donation in Australia. This included a strengthened focus on the collaborative model involving a donation specialist nurse in all family donation conversations.
Focus Area 4: Implement the Australian and New Zealand Paired Kidney Exchange Program
The Australian and New Zealand Paired Kidney Exchange (ANZKX) commenced on 1 July 2019, with the first exchange successfully occurring in October 2019. This trans-Tasman collaboration has increased the number of incompatible pairs enrolled in the program and broadened the diversity of participants. This provides greater opportunity for the identification of compatible pairs and subsequent transplants for participants in both countries. The success of the program is the result of extensive collaborations between the OTA, the ANZKX team at Royal Melbourne Hospital, Australian and New Zealand transplant units, the New Zealand Ministry of Health, and Australian Government border force and biosecurity agencies.
In 2019 there were 54 transplants facilitated through the Australian Paired Kidney Exchange Program (AKX) and the ANZKX, including four successful trans-Tasman exchanges since the ANZKX began. This is the highest number of transplants facilitated per year by the program to date. Since the commencement of the AKX program in 2010, there had been 359 living transplants at 30 June 2020.
In March 2020 living kidney donation programs, including the ANZKX program, were suspended as a result of the COVID-19 pandemic. Decisions to delay kidney transplants were made to protect the health of patients due to the risk of COVID-19 infection during a highly-immunosuppressed post-transplantation phase, recognising that patients were receiving effective dialysis treatment.
While a gradual recommencement of living kidney transplant programs occurred from May 2020, the complexities of the ANZKX program have meant a delayed recommencement of the program because of the continued closure of international borders. Both countries have agreed to look at conducting their paired kidney exchange programs independently in the interim. The ANZKX program clinical team continues to monitor developments and explore all opportunities for patients enrolled in the program, with the trans-Tasman exchange to recommence as soon as it is both safely and logistically possible.
Focus Area 5: Continue to collaborate with the eye and tissue sector to drive optimal outcomes
The OTA’s Eye and Tissue Advisory Committee (ETAC) held three formal meetings and five purpose-specific meetings in 2019–20. This committee continues to be a key collaboration that focuses on increasing eye and tissue donation in Australia. The current ETAC work plan includes a number of key activities aimed at:
- increasing community awareness
- increasing donation opportunities by reviewing inclusion and exclusion criteria
- reviewing the supply of skin in Australia.
All of these activities require collaboration with not only the eye and tissue sector but also all governments, the TGA and the community. In March 2020 ETAC welcomed their first community representative, who has been fortunate enough to receive the gift of sight through corneal transplantation. This community representative will bring an important community perspective to ETAC discussions and activities.
We played a key role in supporting the response to the White Island volcano disaster in December 2019. This included facilitating the coordination of skin bank, TGA and government activities, enabling the critical demand for skin to be met following the repatriation of patients to burns units in Australia. This included national communication across the sector and facilitating consultation with other federal government agencies, the DonateLife Network and clinical stakeholders.
We also worked closely with eye and tissue sector representatives to finalise the Australian Donor Risk Interview (AUS-DRAI) tool in March 2020. The AUS-DRAI has been agreed as the single instrument to replace the current medical-social questionnaire used to gather information about a potential organ, eye and tissue donor. The AUS-DRAI and the associated guidance document has been finalised and endorsed by relevant stakeholders, including the Eye Bank Association of Australia and New Zealand and the Biotherapeutics Association of Australasia. Eye and tissue banks are currently working to train staff in using the new tool which is planned to commence in 2020–21.
Focus Area 6: Review and update the suite of culturally appropriate resources on organ and tissue donation
All major religions support organ and tissue donation as an act of charity and goodwill. People from all walks of life depend on organ and tissue donation to improve their quality of life – or perhaps even save their life.
We produce information and other resources specifically for multicultural and faith communities, including resources available in 18 languages. In 2019–20 these resources were reviewed, and more work needs to be done in 2020–21 to update them.
A number of Community Awareness Grants were provided to community groups who created awareness and education programs about organ and tissue donation among culturally and linguistically diverse and Indigenous Australian communities across Australia. For example, a grant was issued to the Federation of Ethnic Communities Council of Australia for them to connect with the community about organ and tissue donation and share these stories widely on social media and in-language radio. They engaged with prominent community leaders, religious figures, medical professionals, donor families and recipients. They also delivered events where they distributed multilingual resources and hosted live Q&A sessions to answer common misconceptions.
Queensland Remote Aboriginal Media also received a Community Awareness Grant to bring together Aboriginal and Torres Strait radio broadcasters, and provide them with scripts and resources to encourage family conversations and online registration (including broadcasting in language).
Focus Area 7: Implement the Data Governance Framework
The Data Governance Framework outlines the arrangements for the collective responsibility of managing data assets in the organ and tissue donation and transplantation sector. The framework, and the associated Data Governance and Privacy Principles, support the consistent provision of high-quality data. This informs decision-making, drives improvement in organ and tissue donation outcomes, and promotes compliance with relevant legal, regulatory and governance environments.
We established a Data Governance Committee in July 2019 as part of the implementation of the Data Governance Framework. The committee meets quarterly and includes representatives from the major organ and tissue donation and transplantation data asset hosts, as well as the state and territory health departments. The Data Governance Committee considers privacy and governance issues involved in data sharing and release from the specified data assets. It is working towards expanding the data available for analysis and reporting to improve clinical practice and donation and transplant outcomes.
Focus Area 8: Pursue new channels to promote and increase registration on the Australian Organ Donor Register
We continue to partner with community organisations to identify opportunities to promote registration on the Australian Organ Donor Register (AODR). We use consistent messaging that this can be achieved in 'less than a minute' using the streamlined registration channel on the DonateLife website, which interfaces directly with the AODR. In 2019 there were close to 49,000 new donation registrations through this DonateLife website channel.
The link to our channel has been used by both Access Canberra and VicRoads to provide a link to our website for online drivers licence renewals.
The OTA Board recommended that all Australians should be able to register to be a donor on the AODR when they apply for – or renew – their drivers licence. Currently, this only occurs in South Australia, the state with the highest registration rates nationally. We have been working with the Commonwealth Department of Health, which is responsible for the policy, and Services Australia, which operates the AODR, to progress options for governments.
Services Australia also incorporated targeted banner messaging and links on the myGov and Medicare websites, and on the Express Plus Medicare application, to prompt registration through those channels.
Focus Area 9: Continue to collaborate with the retrieval and transplantation sector
Our Transplant Liaison Reference Group (TRLG) continues to be a key forum for collaborating with the retrieval and transplantation sector. The TLRG meets three times a year and includes representatives from the Transplantation Society of Australia and New Zealand (TSANZ) and their Advisory Committees, the Transplant Nurses Association, the Australasian Transplant Coordinators Association, Transplant Australia, the DonateLife Network and the Australian and New Zealand Intensive Care Society.
Throughout the year the TLRG have provided advice on key areas of focus across the donation and transplantation system. These include the review of organ allocation systems, the introduction of the OrganMatch Clinical Portal, and planning the transition to virtual cross-matching for tissue typing. Initial TLRG discussions on the emerging COVID-19 pandemic in early March led to the establishment of the COVID-19 National Transplantation and Donation Rapid Response Taskforce. This has been a critical forum for managing the COVID-19 response.
The OrganMatch Strategic Governance Committee was established by the OTA in November 2019. Its role is to provide national governance and oversight of OrganMatch with a focus on maintaining clinical currency and driving clinical best practice change that will optimise organ donation and transplantation outcomes. The committee is chaired by the TSANZ President and consists of representatives from each of the TSANZ organ-specific advisory committees, the OTA, tissue typing, the National Manager of OrganMatch, a consumer representative, and representatives of professional societies and outcome registries.
During 2019–20 we continued to collaborate with the TSANZ on key projects to support the sector, with the OTA providing funding and support to the following projects:
- an update of the TSANZ's Clinical guidelines for organ transplantation from deceased donors to include evidence-based guidance on donor assessment for the risk of malignancy transmission
- a working group to facilitate the transition to virtual cross-matching for tissue typing
- the continued review of the kidney allocation system and algorithms
- the continued review of the non-renal allocation and offer processes.
The OTA and TSANZ have collaborated since 2015 to host a one-day combined forum for donation and transplantation clinicians to discuss common areas of interest and evolving clinical practice. Following the transition to a successful two-day national conference in 2019, we were working with TSANZ to co-host the next combined conference in March 2021. Planning commenced in 2019–20 but, due to the uncertainty of the COVID-19 pandemic, the conference has been cancelled. We will continue to work with the transplant sector to explore the alternative delivery of a virtual education program to include targeted presentations and discussions.
We continue to collaborate with our international colleagues through donation and transplantation conferences nationally and internationally. These forums provide an invaluable opportunity to share experiences and learn from international organ donation and transplantation experts to further refine the system within Australia.
In November 2019, our National Medical Director, Dr Helen Opdam, Chief Executive Officer, Lucinda Barry and Director of Data and Analytics, Mark McDonald attended the International Society for Organ Donation and Procurement (ISODP) Congress held in Dubai. Dr Opdam as a member of the ISODP, was invited to present the “The Australian Experience” in the plenary session “Showcase on Organ Donation”.
The OTA sponsored Professor Sam Shemie, paediatric critical care physician at the Montreal Children’s Hospital and Medical Advisor for deceased donation for Canadian Blood Services, to attend and present at various sessions associated with the ANZICS World Congress of Intensive Care held in Melbourne in October 2019. Professor Shemie shared his insights on the Canadian journey in organ donation and transplantation in contrast to the Australian journey.
Focus Area 10: Deliver the OrganMatch Clinical Portal and Self-Service Reporting
The OrganMatch Clinical Portal was rolled out in September 2019 to all transplant units.It enabled more than 650 clinical transplant staff across 46 transplant units to access the Clinical Portal for real-time results and reports, and for matching and transplant information for their patients. This was the first time the clinical units have had direct access to the organ matching system, through a secure web portal that provides restricted access at the individual clinical and transplant units and clinician level.
We established a new position – National Manager OrganMatch – which plays a pivotal role in communication and collaboration with the transplant sector for matters relating to OrganMatch and the Clinical Portal. This role has been instrumental in the implementation, activation and ongoing support of the Clinical Portal for clinicians and transplant units.
The Clinical Portal enables clinicians to have real-time access to a wide range of patient information. This includes wait-list information, current Human Leukocyte Antigen antibody data, transplant and matching event reports such as Donor Specific Antigen assessments, cross-match results, and histocompatibility assessments.
Following the rollout, the focus for 2019–20 has been providing enhancements and improvements to the Clinical Portal for the end user. This includes new access permissions that allow transplant units to use and extract real-time patient information, which has provided efficiencies for both the transplant coordinator and the tissue-typing laboratories.