In 2021, Health Consumers’ Council received a Community Awareness Grant from the Organ and Tissue Authority to undertake a project aimed at empowering Western Australians to increase their knowledge of the benefits of organ and tissue donation and transplantation, to encourage family discussion and know each other’s donation decisions, and to register online on the Australian Organ Donor Register.
We want West Australians to be able to make informed decisions about organ and tissue donation, and that means ensuring they can access the right resources to help them make the decision, register, and have that conversation with their family.
Our focus is on increasing awareness and encouraging conversation among Aboriginal people and people from Culturally and Linguistically Diverse backgrounds.
As part of the grant, we hosted community conversations with Aboriginal people, young Aboriginal people, people from culturally and linguistically diverse backgrounds, and young people from culturally and linguistically diverse backgrounds, to learn more about what the community already knows about organ and tissue donation, what they’d like to know, and what resources would be most beneficial for them.
You can request a copy of the insights from these community conversations by emailing info@hconc.org.au
What we learned
It quickly became clear that organ and tissue donation is a topic people in these communities want to talk about.
They told us they want to know more about the issue, and how it could impact them and their families. They want to be asked their thoughts on the topic, and how information can best be shared with their communities. They want to hear people’s stories.
Most importantly, these conversations need to be held in a way that is respectful of the donor, the donor family, culture, and personal beliefs. In particular, many of the young people we spoke to had lots of ideas about how information around organ and tissue donation can be shared with their communities.
These sessions showed us that the importance of the human connection and the stories of people who have been both donors and recipients, can’t be overestimated.
Resources
We produced a range of resources based on these community conversations, including a video, a series of graphics answering the most commonly asked questions, posters to add details of your own community conversation or event, and designs for two pull-up banner to be used at events.
If you’d like to receive high resolution images, a copy of the video, or discuss how you can use the banner or postsers, please email info@hconc.org.au
Inquiry into organ and tissue donation in Western Australia
In February 2023, the Standing Committee on Public Administration announced the commencement of an inquiry into organ and tissue donation.
The Committee’s inquiry would consider issues and opportunities to improve organ and tissue donation rates in Western Australia, looking at:
- the effectiveness of the current model for organ and tissue donation in Western Australia
- issues impacting organ and tissue donation rates in Western Australia
- opportunities to improve organ and tissue donation rates in Western Australia
- and any other matters considered relevant by the Committee.
Health Consumers’ Council provided a submission to the enquiry based on the yarns, stories, and experiences of the consumers we consulted with through the Community Awareness Grant we received from the Organ and Tissue Authority.
We were then asked to speak further to these learnings and Clare, Tania and Nadeen from Health Consumers’ Council appeared before the Standing Committee for a hearing in June 2023. We were joined by Caz, a double lung transplant recipient who shared her story with us during the work we did in 2021.
You can read our submission to the inquiry here and watch a recording of our hearing before the Standing Committee here.