Engaging with Consumers

Sydney Cancer Partners provides education, resources and funding for our members to engage with consumers at all stages of research

Consumer Remuneration and Reimbursement

Current guidelines suggest that it is good practice to offer consumers involved in research compensation for their time. Sydney Cancer Partners supports these guidelines and has established a process to help researchers by facilitating payment (honorarium) for consumers as well as reimbursement for certain expenses incurred. The aim of this support is to primarily fund cancer research project design and to assist with engaging consumers for grant submission.

Please ensure you have already discussed with your consumer what payments and reimbursement will be offered in line with the Health Consumers NSW reimbursement policy. Payment arrangements need to be in place and explained to consumers prior to the beginning of their involvement. Some consumers may prefer not to be paid or reimbursed; instead they prefer to decline payment.

It is also important that consumers are aware that any payments they receive may affect their taxable income, pension or benefits. It is good practice to recommend that consumers get advice if they are unsure if payments will affect their tax status.

For further information on Sydney Cancer Partners support for consumer remuneration and reimbursement please contact us via email.

Help finding consumers

The following organisations assist with connecting researchers to relevant consumers. Please get in touch if you need any assistance finding a consumer for your research project.

Cancer Voices NSW Consumer Involvement in Research matching service
Sydney Health Partners Research Directory (consumers)
Aboriginal Health Service e.g. NACCHO
Breast Cancer Network Australia (BCNA) Seat at the Table; Review & Survey group (assistance with completing surveys)
Consumer Led Organisations and Cancer Peak Bodies e.g. Leukaemia Foundation; local Cancer Council NSW office; local cancer support groups
Health Advocacy Organisations e.g. Consumers Health Forum; Health Consumers NSW
National Breast Cancer Foundation’s Register4 Program
Other Consumer Networks e.g. Local Health District Patient Experience Manager; Primary Health Care Network

Consumer Involvement in Research Resources

Who are consumers?

We are all health consumers and those involved in cancer research usually have a unique cancer story. Unlike clinicians and researchers who study hard to become experts in their field, health consumers are experts by experience. Experiences do not have to be traumatic or negative, and can include carers and family members. Health consumers have a whole life of experiences they can contribute, not just their disease. Consider including multiple consumers in your research for diversity and peer support and someone who represents a group and/or is well networked.

Consumer involvement in research is an active partnership between a trained and informed consumer and a researcher to shape decisions about research priorities, practices and policies or service delivery. It is a two-way interaction and is about doing projects ‘WITH’ or ‘BY’ consumers, rather than ‘to’ or ‘about’ them. It is not just a name on a grant application.

Explore the following resources to learn more about the importance of involving consumers in your research, examples of how it has been done well, toolkits, training, resources, education and more.

Cancer Voices NSW Guide for Consumers; Guide for Researchers and Frequently Asked Questions
Health Consumers NSW Research training for consumers and researchers
Cancer Council Online Learning
Sydney Health Partners Consumer and Community Involvement Resources
Monash Partners training modules and lunchtime seminars
ACTA/CT:IQ Consumer Involvement & Engagement Toolkit
Australian Commission on Safety and Quality in Health Care National Clinical Trials Governance Framework
Australian Health Research Alliance (AHRA) CCI Initiative
AHRA/WAHTN Involving Consumers in Health and Medical Research Handbook
Health Issues Centre (VIC) resources and accredited training
Indigo Daya Participation Ladder
International Association of Public Participation (IAP2) Public Participation Spectrum
NHMRC Consumer and Community Involvement in Health and Medical Research Toolkit
NHMRC Statement on consumer and community involvement in health and medical research
Telethon Kids Institute resources and consumer training, including Purple Planning Book, Green Book, Fact sheets and Barriers report
West Australian Health Translation Network (WAHTN) Consumer and Community Involvement Program and Involving Consumers in Health and Medical Research handbook

Engaging with Consumers

Consumer Remuneration and Reimbursement

Key Documents

Help finding consumers

Consumer Involvement in Research Resources