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Objective 3: Increase registration and family discussion contributing to higher consent rates

This objective focuses on increasing consent to donation through a number of initiatives to engage both the general community and clinicians.

3.1 Increase community acceptance of organ and tissue donation

Access to the life-saving and life-enhancing benefits of transplantation depends on community willingness to donate and public confidence in the donation process.

Throughout 2018–19, in addition to national events such as DonateLife Week and Thank You Day (see Working with the community), a number of community awareness activities were run or supported by the OTA and the DonateLife Network.

Friday 31 August 2018 marked the fourth annual Jersey Day, a national community-led initiative organised by the Nathan Gremmo Community Fund. This event was dedicated to spreading the message of the benefits of organ and tissue donation and encouraging more Australians to register to be an organ and tissue donor. Jersey Day is inspired by Nathan Gremmo who was tragically lost in an accident in May 2015. Nathan’s family agreed to him becoming a donor. In memory of Nathan, Jersey Day is held to encourage Australians to wear their team jersey to school or work, discuss organ and tissue donation, and register to donate.

In 2018–19 we provided Community Awareness Grants across 20 organisations to run targeted activities to increase awareness of organ and tissue donation. The grants provide an important opportunity for partnering with community organisations that are well-placed to introduce and promote donation within their networks and communities.

To view the list of the 20 successful Community Awareness Grant recipients visit our website at www.donatelife.gov.au/sites/default/files/CAGs%20 2018.pdf.

Eight of the grants awarded were planned activities to engage with Aboriginal and Torres Strait Islander and multicultural communities. These activities used culturally appropriate approaches to promote the importance of family discussion and registration of donation wishes. One of these projects involved creating a series of videos aimed at Aboriginal and Torres Strait Islander communities to promote organ donation. The project was developed in close collaboration with Aboriginal and Torres Strait Islander participants.

The Dying to live documentary screened in cinemas in Australia in the second half of 2018. The film, produced by Aquarius Productions, explores the complex world of organ and tissue transplantation, sharing stories of real people, including a donor family and Australians waiting for a life-saving transplant. It calls on people to register as a donor on the Australian Organ Donor Register and talk with family members and friends about it. We provided advice on the film, reviewed relevant aspects to ensure accuracy, and facilitated access to talent and experts. Working closely with the DonateLife Network and our community stakeholders, we also facilitated a number of events to promote organ and tissue donation in the community sector, for example, the Gift of Life Walk, the Australian Transplant Games, Saffron Day and the Gift of Life Garden.

Honouring Deyann Udani on Saffron Day

Saffron Day is a day to honour the life of little Deyaan Udani, a bright seven-year-old boy with an infectious smile, who tragically passed away in 2016. Deyaan’s parents’ decision to donate his organs meant the lives of four people were saved as a result of this incredible gift.

When Sydney-based Deeyan Udani was on a holiday in Mumbai, India, with his family, he was rushed to hospital complaining about a severe headache. He underwent surgery but, sadly, the doctors were unable to save him.

Deeyan became India's youngest ever multiple organ donor. His parents, Rupesh and Mili Udani, are now sharing their son’s journey. They decided to honor their son by creating Saffron Day – an annual day held in November that raises awareness of organ donation within the Indian and other multicultural communities in Australia.

The first Saffron Day was held on Friday 9 November 2018. It was officially launched by Sydney Shrimad Rajchandra Mission Australia at West Pennant Hills Valley Community Centre and was attended by 125 people who promoted their individual Saffron Day photos on social media.

Saffron was Deyaan’s favourite colour, and signifies courage and strength – two key attributes exhibited by donor families Saffron Day is celebrated via a social media campaign where people wear Saffron Day merchandise at their workplace and in their communities, as well as at an annual launch event to raise awareness and discuss the facts about organ donation.

A Facebook and Twitter page was created for Saffron Day in 2018, reaching approximately 100,000 people across Australia as well as the UK, USA, Singapore, Hong Kong and India. Saffron Day received a Community Awareness Grant in 2018 in order to run the campaign and will hold their second Saffron Day in November 2019.

A photograph of Deyann Udani - Saffron Day is a day to honour Deyann who became an organ donor in 2016 Deyann Udani

Gift of Life Garden

On Sunday 25 November 2018, the Gift of Life Garden was opened at the National Arboretum in Canberra. The garden was an initiative of Gift of Life Incorporated, a Canberra-based community volunteer organisation that promotes organ and tissue donation.

The garden recognises those affected by organ and tissue donation and transplantation, reflecting on the process of organ donation where the loss of one life can mean a new chance for another. It comprises winding paths, a mixture of plants, rock features, cascading water, viewing portals and a nook with an inspiring symbolic sculpture, Confluence. The garden was created not only for organ donors and recipients, and their families, but for the many visitors to the National Arboretum each year, giving them the opportunity to contemplate the importance of donation and consider registering as a donor.

The garden was officially opened by Ms Tara Cheyne MLA, on behalf of the ACT Government, and the Hon Ken Wyatt AM MP, on behalf of the Australian Government.

A photograph of the Gift of Life Garden at the National Arboretum in Canberra, ACTGift of Life Garden, National Arboretum

3.2 Increase registration on the Australian Organ Donor Register

Data shows that two factors – joining the AODR and letting family members know you want to be a donor – are associated with higher rates of consent. However, although the majority of Australians support donation, only one in three Australians have registered to donate.

Impact of registration and family discussion on consent rates

When a person dies in a situation where they can become a donor, the possibility of donation is always raised with their family who need to make the decision about donation.

Specialist donation hospital staff check the Australian Organ Donor Register (AODR) to find out whether the person had registered to be a donor, and share this information with the family.

Registration and knowing their loved one wanted to be a donor make a major difference when families are faced with making a decision about donation.

In 2018, more than nine out of 10 families agreed to donation when their loved one had registered to donate on the AODR. This dropped to seven out of 10 when the family knew what their loved one wanted and five out of 10 when their loved one had neither registered nor discussed their wishes with family members.

While the majority of Australians support organ and tissue donation, at December 2018 only one in three had recorded their decision to be a donor on the AODR. Registration rates for each state and territory are provided below.

The ongoing priority in 2019–20 is to increase registration and encourage family discussion. This includes embedding the simplified online form onto national platforms to increase access by Australians when in an online environment.

Registration and family discussionA series of pie graphs showing consent rates when the family member is registered on the AODR, when the family knows their family member wants to be a donor and when the family is unaware of their family member's wishes

State and territory registration rates 2018A vertical bar graph showing state and territory registration rates in 2018

A key focus of our community awareness activities in 2018–19 was to encourage Australians to register on the AODR. These activities included national events such as DonateLife Week, other community education and outreach activities, national and local media, social media, and printed and online information.

We also benefited from our partnerships with the AFL, FFA and Tonic Health Media. These partnerships were used in different ways to further increase awareness of organ and tissue donation, and to encourage Australians to register as donors.

We continued to work with government and community stakeholders to leverage our streamlined registration channel and encourage registration via third party platforms. This included monitoring and reporting registrations to measure the success of each partnership and engagement, and analysing the data to look for opportunities to improve our targeting and engagement.

Our annual competitive Community Awareness Grant round was successfully undertaken with a focus on encouraging registration.

3.3 Increase family discussion and knowledge of donation decisions

Consideration of organ and tissue donation comes at an intensely emotional time for families. When families are faced with the situation of being asked to agree to donation, it makes a big difference if the potential donor is registered on the AODR, and if their family knows they wanted to be a donor.

A key element of messaging for events such as DonateLife Week is to not only encourage Australians to register to be an organ and tissue donor but to also tell their family and friends they want to be a donor.

We manage five social media pages – Facebook, Twitter, Instagram, YouTube and LinkedIn. The aim of the national DonateLife social media pages is to engage target audiences on the topic of donation and enable them to connect with accurate and timely information. Our followers on social media are engaged and supportive, and they comment on – and share – our posts regularly. The high engagement on our social media channels encourages discussion with family and friends on the topic of organ and tissue donation.