Increasing registrations on the Australian Organ Donation Register
Organ transplantation is a powerful lifesaving therapy for people with organ failure.
Australia has an excellent record in the successful transplantation of organs and tissue but struggles with the issue of organ availability.
In Australia’s “opt-in” donation system, people have the choice to register their donation decision on the Australian Organ Donor Register (AODR). Historically these donation decisions were recorded on the driver's license. Between 2012 and 2015 (in all states except South Australia), the recording of donation decisions was transitioned to Australian Organ Donor Register (AODR).
The current rate of 20.7 donors per million population per year is below target, below the donor rates of comparable nations, and below the demand for organs for transplantation.
The lack of available donated organs is partially due to low rates of consent from next-of-kin in the Intensive Care Unit (ICU) when the opportunity for donation typically arises. Critical to the next-of-kin consent, is the deceased’s prior registration of their donation decision on the AODR.
The final donation decision is always made by the next-of-kin. When the deceased has not registered their decision on the AODR, making this decision in the ICU can be difficult for families as they may be overwhelmed, tired, and simply unable to process information provided by healthcare professionals. When the decision of the deceased is unknown, a “no” to donation is often the decision of the least discomfort for the next-of-kin.
Registration on the AODR is fundamental to donation consent; 90% of consent-to-donate registrations are honored by the next-of-kin, in the ICU. Family consent to donation drops to 44% when the wishes of the deceased are unknown.
Despite this, less than 30% of Australia’s eligible population have registered their donation decision on the Australian Organ Donor Register. Thus, increasing the rate of registration on the AODR is a forerunner to increasing transplantation rates.
Our research team responded to this need to increase registration rates by developing the Immediate Registration Opportunity Initiative.
Overview of Impact
The impact of our research is demonstrated in these key areas.
- To date a total of 910 people have registered their donation decision on the AODR at one of our interactive registration opportunity stalls. Registration rates achieved through this initiative consistently outperform current registration rates in Australia. Up to 90% of those participants who register do so on the spot.
- Interactions with the public (exceeding 2,500 to date) have increased the level of understanding and awareness of organ donation and registration
- Our face to face interactions with the public generally lead to further conversations – our survey evidence suggests that many people talk to at least 4 more people about the donation conversation they had with us, or their donation decision – leading to more registrations.
- The development of a theoretically-driven short survey that measures positive and negative beliefs about organ donation, and serves as an interactive tool that fosters communication and allows the public to ask those difficult donation questions.
- Our collaboration with the NSW Organ and Tissue Donation Service has led to the development of a training manual, a training video and workshops for volunteers and donation staff to offer the Immediate Registration Opportunity Initiative.
- Through our research-evidenced position that investigated how offering the public a choice with their donation decision (registration options are - ‘yes’ to donation, ‘yes’ to donating some organs and tissue, or ‘no’ to donation) encourages the public to engage in donation conversations and openly discuss their concerns and fears.
The 1400 Australians currently waitlisted for an organ transplant are ultimately the intended beneficiaries of increased registrations on the AODR. Every registration on the AODR has the potential to save up to 10 lives.
By August 2019, 910 registrations had been recorded on the AODR as a result of our direct engagement with the NSW community.
Other beneficiaries include the NSW OTDS, through the development of evidence-based strategies and training resources and the families of both donors and recipients.
The direct impact from this research is the number of new registrations on the AODR and the number of interactions our team has had with the NSW public.
To-date, the Immediate Registration Opportunity Initiative has been offered at:
- Three Sydney hospitals (two public and one private)
- Qantas Headquarters at Mascot, NSW
- End of year 12 ‘Schoolies’ celebration at Byron Bay, NSW
- Bstreetsmart Road safety educational event for NSW metropolitan and regional High School students at Qudos Bank Arena in Sydney
- Coffs Harbour City Council
- Two National Grand Final sporting matches ( NRL & State of Origin: ANZ stadium Sydney)
- Two State FFA Cup Final sporting matches in Sydney
- Tweeds Head charity cycle ride.
- Coffs Harbour community markets and Harmony day festival
Although registration rates differed at each location, registration rates at every location far exceed the current national registration rate. Each location contributed to our understanding of how socio-cultural and religious differences, context, mood, beliefs, previous knowledge and contact with donation and registration relate to registration behavior. The number of registrations made demonstrates that, as a strategy, offering the Immediate Registration Opportunity Initiative has the potential to substantially increase registration rates nationally.
The current development of strategies to scale the Immediate Registration Opportunity initiative nationally is expected to further increase this impact.
- Over 2500 interactions/conversations with the public have taken place across 14 locations in NSW.
- Between 60-90% of people who are eligible to register will register on the spot when given the opportunity to do so.
- 910 new registrations on the AODR have been made since the Immediate Registration Opportunity Initiative was first developed.
- 5 seminar papers have been presented to affiliated state-based organ donation organisations.
- NSW OTDS Donation Specialist Nurses and Coordinators attended a training workshop on offering the Immediate Registration Opportunity Initiative.
- To-date, 84 volunteers viewed our training video at NSW OTDS volunteer induction sessions. This is expected to increase.
- Media coverage has included Prime 7 News, Channel 9, and “The Pulse” NSW Mid North Coast LHD.
- Our research has been presented internationally (by invitation) at a seminar at Aix-en-Marseille University France (2019), and an international conference in Marseille 2016.
In 2015, a pilot study was conducted as a Psychology Honours project in the School of Health & Human Sciences. This project demonstrated that registrations could be significantly increased if people were given an immediate-on-the spot opportunity to register. In 2016, seed funding from the NSW Organ and Tissue Donation Service (NSW OTDS) allowed us to develop the Immediate Registration Opportunity Initiative. Our collaborators, NSW OTDS, have continued to provide support and funding for the Initiative’s ongoing development. This has allowed us to investigate the relationship of organ donation beliefs, context and mood with registration behavior along with the impact of different locations, socio-economic areas, staffing levels and training. We are currently developing strategies that will enable the initiative to be rolled out on a larger scale, capitalising on inter-individual communications and involving Government organisations and the corporate sector.
The close working relationship that Associate Professor Gail Moloney and the research team have with NSW Organ and Tissue Donation Service is a key component of the Initiative’s success. This has allowed the translation of the theoretical underpinnings pivotal to the project into strategies that have successfully increased the number of registrations on the Australian Organ Donor Register.
The 5-year plan is a State, then national, rollout of the Immediate Registration Opportunity Initiative. Our vision is to increase the number of registrations dramatically on the AODR and, thus, increase the number of lifesaving transplants.
Acknowledgements / Collaborators
This research project was conducted by a partnership between SCU and the NSW Organ and Tissue Donation Service. The team of researchers who contributed to this research project included Associate Professor Gail Moloney (SCU), Dr Michael Sutherland (Mid North Coast Local Health District & Organ and Tissue Donation Service, NSW) (co-leaders), Professor Iain Walker (ANU), Anne Judd (Mid North Coast Local Health District & Organ and Tissue Donation Service, NSW), Dr Alison Bowling (SCU), Maddison Norton (Research Assistant & SCU Ph.D. Candidate)
Research Assistants involved in the project: Parul Punjabi Jagdish, Lehanne Whittaker, Rachel Clark, Suzanne Rienks, Marguerite Rowe and Catherine Foley
The research team is identified through the DRREAM acronym - Donation, Registration, Research, Education, Awareness