Consumer and Community Engagement
Overview
At ANZORRG, we are deeply committed to improving the quality and safety of care for people affected by organ and tissue failure. We do this by collecting and analysing health information through our network of clinical quality registries:
These registries gather important data from hospitals and clinics across Australia and Aotearoa New Zealand to understand how organ replacement therapies such as dialysis or organ and tissue transplantation are delivered and how it can be improved.
What is a Clinical Quality Registry?
A clinical quality registry collects and monitors health information about people receiving specific treatments. At ANZORRG, our registries focus on organ and tissue failure.
We use this information to:
- Monitor treatment outcomes and safety
- Identify areas for improvement in care
- Provide feedback to clinicians, hospitals, and health departments
- Support research that benefits patients
What Does Participation in a Registry Mean?
If you are receiving treatment for organ failure through a replacement therapy (such as dialysis) or an organ or tissue transplant, your health information may be included in one of ANZORRG’s registries.
Participation is completely voluntary and usually involves:
- Your healthcare provider securely sharing information about your diagnosis, treatment, and progress with the relevant registry
All information is:
- Stored securely and handled confidentially
- De-identified in any public reports or research
- Protected by strict privacy and ethical safeguards
You can choose not to participate at any time without affecting your care.
Partnering with People with Lived Experience
We believe that people living with organ or tissue failure, their families, caregivers, and donors are all essential partners in shaping the work we do.
To ensure the voices of those with lived experience guide our priorities, ANZORRG supports two key initiatives:
This is an open invitation for anyone with lived experience of organ or tissue failure, caregivers, donors and general public to stay connected with ANZORRG. Members receive:
- Updates about our work
- Opportunities to provide feedback
- Invitations to short-term projects like focus groups or resource reviews
No special knowledge is required – just your experience and your voice.
Join the Community Interest Register hereThe CAP includes individuals who are receiving dialysis, have had a kidney transplant, have donated a kidney, or have supported someone living with kidney disease as a carer, family member, or friend. The panel provides strategic advice on:
- What data is collected and why
- How information is used and shared
- Research priorities and patient-focused outputs
Getting in Touch
You can connect with one of our Consumer Engagement Officers to learn more about how you can be involved with ANZORRG. This might include joining a discussion group, sharing your perspective on registry activities and reports, or contributing to research and quality improvement projects that affect people receiving organ replacement therapies.
Whether you want to be part of a one-off conversation or contribute to ongoing advisory groups, we’d love to hear from you.
Get in touch by phone (+61 8 8128 4758) or email us at community@anzdata.org.au.