ANZDATA is committed to the engagement and collaboration of Consumers and the broader kidney community.

Consumer Advisory Panels (CAPs) are committees made up of consumers or community representatives appointed in an advisory capacity by organisations. Consumers have knowledge and experience of what it is like to have a health condition and bring a unique perspective to health and research (*Kelson et al 2012).  ANZDATA strongly supports the involvement of consumers in the registry to guide data collection, presentation, and research focus.

Our inaugural Consumer Advisory Panel (CAP) was formed in 2023, consisting of individuals from various parts of Australia and New Zealand. Each member possesses firsthand experience with kidney disease, either as a patient, caregiver, or family member. Our CAP members bring a wealth of knowledge and personal insights, which will greatly contribute to our mission to Improve the quality of care and outcomes for people with end-stage kidney disease in Australia and New Zealand.

The ANZDATA CAP will be strengthened by establishing a ‘Consumer Interest Register’, consisting of consumers who will actively contribute to projects and support the goals of the CAP.


To Improve the quality of care and outcomes for people with kidney failure in Australia and New Zealand.


The aim of the CAP is to provide ANZDATA with high-level feedback on specific projects, research directions, and priorities from a consumer perspective.

The CAP advocates for people with kidney disease in Australia and New Zealand and represents consumer views within the community particularly those within transplant and dialysis services.

CAP Composition and Terms of Reference

  • The Panel will comprise of a Chairperson and a number of members with lived experience of kidney disease or experience as a caregiver/donor/family member from across Australia and New Zealand.
  • Membership is advertised, using a variety of channels, with members required to submit an expression of interest.
  • It is expected that quarterly meetings will be held each year, with the addition of emerging meetings as required.
  • The role of the CAP is to provide advisory and decision-making support through consensus, considering divergent views and rationales, which are documented in the meeting minutes. The final approval authority lies with the Executive Director
  • Members of the CAP will actively participate in and contribute to meetings, support ANZDATA initiatives, maintain confidentiality, and treat others in a way that is polite, respectful, transparent, and culturally sensitive.
  • Consumer members are eligible for sitting and preparation fees in line with the SAHMRI Consumer and Community Engagement Policy for Reimbursement and/or Sitting Fees of Advisory Groups
  • Being a member of the CAP is voluntary and resignations can be received at any time and should be addressed in writing to the Chairperson as well as the ANZDATA Patient engagement officer via

CAP Responsibilities

  • Collaborating with ANZDATA staff to co-design consumer-specific plain language summaries, infographics, and other consumer-facing documents.
  • Providing expert advice on emerging local, national, and international issues related to consumer engagement, particularly from a registry perspective.
  • Offering guidance on effective consumer and community engagement strategies.
  • Conducting evaluations to assess the level of consumer involvement within ANZDATA.

To learn more about other consumer engagement initiatives, we invite you to visit our page at

* Kelson, M., Akl, E. A., et al. (2012). Integrating values and consumer involvement in guidelines with the patient at the center: article 8 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report. Proceedings of the American Thoracic Society 9(5): 262-268.