As a researcher, your first step would normally be to connect with your local consumer umbrella group, such as Health Consumers Queensland. These organisations provide valuable training and support for consumer involvement. You can also consider reaching out to disease or condition-specific peak bodies in your state, or other health organisations that may maintain registries of consumers.
In general, the words consumer engagement and consumer participation are often used interchangeably. However, in research, consumer engagement involves consumers guiding and providing feedback to shape research, while consumer participation refers to individuals contributing data that is studied as part of a research project.
If your purpose is to draw on community expertise or ‘lived’ experience to inform aspects of your research, then you don’t require ethics approval.
You can refer to this CCI ethics flowchart as a helpful tool for guidance.
Documentation requirements vary by funding body. It's best to check the specific guidelines of the funding application you are submitting.
Ideally, consumers should be paid for their involvement and there are many good reasons to support partnering with consumers with remuneration and reimbursement. Consumers should not be financially disadvantaged as a result of their contribution.
As a first step we recommend you review the guidelines as set out by your local state consumer group or umbrella group. In Queensland this is Health Consumers Queensland (HCQ), Please refer to their comprehensive Guidance on consumer remuneration which includes their position statement and reimbursement rates.
Including consumer engagement activities and associated funding in grant applications is recommended. However, funding is often not available at the grant preparation stage.
Some institutions run programs like the HTQ microgrants scheme where project leads can apply for funding to involve consumers in research priority setting, project ideation and design.
There are also other ways to involve and acknowledge consumers beyond basic consumer remuneration. This could be (if appropriate) listing a consumer as a co-investigator for a funding application, or acknowledging consumers in publications.
This can be tricky. Establishing relationships with peak bodies may help as some may have a consumer database you can utilise. This can help lessen the risk of over-consultation.
Researchers should seek engagement and support from First Nations communities early in the research planning process to ensure cultural respect and relevance.
You can refer to Genomic Partnerships for more information on best practice when working with Aboriginal and Torres Strait Islander peoples.
The number of consumers needed can vary, depending on your project, the scope and the questions you're aiming to address. While involving more people can provide a wider range of perspectives, funding limitations can impact this.
When involving consumers in health research it is important to acknowledge their lived or living experiences and how this may shape their contribution. Providing a safe and supportive environment is key. This includes taking the time to build trust and ensuring the language we use is appropriate and stigma free.
For training on Trauma informed engagement of consumers and carers visit the Lived Experience Australia website.
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Health Translation Queensland acknowledges the Traditional Owners and their custodianship of the lands on which we live, work, and play. We pay our respects to their Ancestors and their Descendants, who continue cultural and spiritual connections to Country. We recognise their valuable contributions to Australian and global society.
