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