For Community

Requesting Consumer Involvement

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Request Consumer Involvement in Your ProjectPayment and ReimbursementAbout the Consumer Interest RegisterANZDATA Consumer Advisory PanelQuestions?Submit a Request for Consumer Participation

Request Consumer Involvement in Your Project

Researchers, clinicians, and organisations are welcome to request consumer involvement in research, clinical trials, resource development, policy work, or other projects related to organ replacement therapies.

ANZORRG supports meaningful and respectful engagement between consumers and researchers by managing a Consumer Interest Register and, where appropriate, connecting external projects with people who have lived experience.

Please ensure your project complies with best-practice consumer engagement standards. In particular:

  • Payment and reimbursement: Consumers should be appropriately compensated for their time, expertise, and any out-of-pocket expenses. Refer to national guidance on payment for consumer involvement below
  • Clarity of purpose: Your request should clearly outline the aim of involvement, role expectations, estimated time commitment, and whether compensation is provided
  • Ethics and confidentiality: If your project requires ethics approval or confidentiality agreements, please indicate this in the form

You can submit your request in one of two ways:

  • Submit Online
    Complete the electronic form at the bottom of this page
  • Download the Request for Consumer Participation Form
    Complete the form and email it to community@anzdata.org.au
Download the request form

Once we receive your request:

  1. We review the information to ensure it aligns with ANZORRG’s values and respects consumers’ time and wellbeing
  2. If appropriate, we contact potential participants from the Consumer Interest Register
  3. Individual consumers may choose whether or not to participate. Inclusion cannot be guaranteed and depends on interest, availability, and relevance

Due to the high number of requests we receive, priority may be given to projects that:

  • Focus on improving outcomes or experiences for people with organ failure
  • Have formal ethics approval or are supported by a recognised organisation
  • Demonstrate clear, respectful engagement processes and appropriate reimbursement

Payment and Reimbursement for Consumers

Consumers contribute time and expertise, and may incur costs such as travel, parking, or printing. Projects requesting consumer involvement should plan for payment or reimbursement and discuss this with consumers early.

Payment can affect tax, pensions, or Centrelink benefits, so flexibility is important. Some consumers may prefer vouchers, honoraria, or reimbursement only. Claims should be easy to submit and processed promptly.

For support, refer to national guidance on consumer payment below:

Health Consumers NSW, remuneration and reimbursement guidelines
Download
Monash Partners, remuneration and reimbursement guidelines
Download
Australian Clinical Trials Alliance, reimbursing consumers
Download
Australian Clinical Trials Alliance, ‘cost calculator’ to guide planning for cost of consumer involvement activities
Download

Your organisation’s finance team can help confirm available payment options and ensure transparent and timely processes.

About the Consumer Interest Register

The ANZORRG Consumer Interest Register is a voluntary network of people who wish to stay connected and informed about organ replacement research and activities. Members are invited to participate in:

  • Focus groups and interviews
  • Co-design workshops and resource development
  • Surveys, advisory groups, or registry activities

We particularly encourage participation from people with lived experience of kidney, heart, or lung failure, including dialysis/transplant recipients, people on the waitlist, tissue or eye graft recipients, living donors, caregivers, and family members.

Find out more about the Community Interest Register

ANZDATA Consumer Advisory Panel (CAP)

Some consumer input is provided by members of the ANZDATA Consumer Advisory Panel. This volunteer group, established in 2023, helps guide registry direction, priorities, communication, and research relevance. Members cannot participate in every project request; therefore, external involvement is considered carefully to avoid overburdening individuals.

Find out more about the CAP

Questions?

If you are unsure whether your project is suitable or need advice on involving consumers ethically and meaningfully, please contact us at community@anzdata.org.au.

Request for Consumer Participation

Requestor Contact details
Details of Request and Activity
Level of Consumer Engagement

Please specify so consumers can assess their availability. For example: 2 x 1-hour online meetings plus 1 hour of reading time.

(e.g. online, in-person meetings, specific venues)

(List individuals and/or organisations)

(E.g. specific age group, dialysis modality, cultural background, areas of interest)

Reimbursement

Reimbursement of consumers is the responsibility of the requestor. In line with international good practice, requestors should consider offering consumers payment (honorarium) for their time and/or reimbursement for any out-of-pocket expenses (e.g. travel, accommodation, respite, childcare). Providing some expenses up front (for example, gift cards) may help ensure a more diverse and inclusive group of participants. It is helpful to discuss early in the process how consumers would like to be acknowledged or paid. Wherever possible, the payment process should be simple and accessible, with clear information on who to contact for assistance.

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