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.
Details of Impact
Research that led to impact
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