CREATING A CONSUMER ADVISORY PANEL WITHIN THE AUSTRALIAN AND NEW ZEALAND DIALYSIS AND TRANSPLANT REGISTRY – BUSINESS AS USUAL
Ms JASMIN MAZIS5, Mr STEPHEN SHIRLEY, Mr LUCA TORISSI2, Mr STEPHEN MCDONALD5, Ms GEORGINA IRISH5
1Australia & New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health & Medical Research Institute (SAHMRI) , Adelaide, Australia, 2Centre for Kidney Research , Sydney , Australia , 3Adelaide Medical School, Faculty of Health & Medical Sciences, Adelaide, Australia, 4Central & Northern Adelaide Renal and Transplantation Services (CNARTS), Royal Adelaide Hospital, Adelaide, Australia, 5 Better Evidence and Translation – Chronic Kidney Disease (BEAT-CKD) Centre of Research Excellence – Partnering with Patients with Chronic Kidney Disease to Transform Care and Outcomes (CRE-PACT) , Sydney , Australia
Aim: To create a consumer advisory panel (CAP) to provide Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) feedback and contribute to specific projects, reports, optimal research directions, and priorities from a consumer perspective.
Background: ANZDATA is a clinical quality registry that collects and produces a wide range of analyses about the treatment outcomes of individuals with kidney failure requiring dialysis and transplant services, in Australia and New Zealand.
The CAP is a group of people from the community who have experience with chronic kidney failure, either as patients or caregivers. ANZDATA highly values their insights and perspectives.
Methods: An expression of interest was distributed to individuals through networks such as Kidney Health Australia, Australian Kidney Trials Network, Renal, and Transplantation Services as well as ANZDATA and associated network newsletters. Applicants were required to be over 18 years of age and have personal experience with chronic kidney disease either as a patient or caregiver, particularly those involved in transplant and dialysis services. Applications could be completed over the phone if the written form posed difficulties.
Results: 31 consumers from Australia and New Zealand inquired about the application. After a thorough vetting process, 11 consumers were selected. Factors such as location, age, culture, and education were considered to ensure participants were from diverse backgrounds.
Conclusions: The CAP has been meeting quarterly since November 2023. They report directly to the ANZDATA executive team and have prioritised Indigenous representation, consumer education, research, and health translation which includes presenting data in a way that is easily accessible and understandable to consumers. Members are invited to attend monthly research meetings and provide feedback to staff.
Biography:
Jasmin is the engagement project officer for South Australian Health and Medical Research Institute (SAHMRI), the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA).
Based in Adelaide- Kaurna Land, Jasmin has a range of healthcare and patient advocacy experience both in Australia and the UK and has worked primarily as a Registered Nurse. Jasmin has a master’s in public and uses her position to encourage consumer involvement across all stages of research in kidney disease.