Consumer Involvement

What is the Consumer Panel?

TOGA advocates for consumer involvement and community engagement in thoracic cancer research. TOGA recognises that the involvement of consumers and community members significantly enhances health research.  The primary purpose of the Consumer Panel is to bring together TOGA community members involved in research or in review of material for research studies that are provided to patients. 

You can read more about the Consumer Panel in the Consumer Panel Terms of Reference and the Working with Consumers Position Statement. 

Why consumer involvement?

TOGA recognises the importance of consumer involvement in the design of clinical trials that will improve outcomes for people affected by thoracic cancers. Consumer representatives possess invaluable first-hand knowledge of what it’s like to have a thoracic cancer, and thus provide a unique viewpoint that can benefit research design.

All TOGA clinical trial concepts are reviewed by consumer representatives, either through TOGA’s Consumer Panel (CP), TOGA’s consumer representatives on the Scientific Committee or through the pool of  consumer representatives who take part in the working groups for concept review.

Increasingly, consumer involvement is required for research grant applications. Consumer involvement is most successful when the consumer representatives are involved in the initial design of the research. Involvement at a later stage can often make it difficult to adapt designs to incorporate beneficial ideas from consumer representatives.

TOGA consumer representatives are keen to be involved in research teams. If you would like to invite a consumer to review your research design, or be part of your research team, please contact us on info@thoraciconcology.org.au with a synopsis of your research proposal. If there is a particular consumer that you would like to be part of your team, please include their name and we will try and accommodate your request.

How does TOGA involve consumers?

TOGA involves consumers in all levels of the organisation including the Board of Directors, the Scientific Committee and a Consumer Panel. Those TOGA Community Members interested in becoming a consumer involved in research are invited to join the working groups involved in peer- and consumer- review of thoracic cancer research. Proposals reviewed and/or developed at this level will be recommended to the TOGA Scientific Committee for TOGA Endorsement. 

Getting involved as a thoracic cancer consumer representative

Consumer representatives come from vastly different backgrounds and experiences. Providing training equips consumers with research knowledge, and skills to provide meaningful input into research through their lived experiences. TOGA has developed training resources to build knowledge in thoracic cancers, clinical trials, research design and the provision of feedback on research documentation.

Please contact us if you are interested in becoming a consumer representative, or to find out more about the role.

You may also like to undertake free training offered by Telethon Kids Institute. There is an option for researchers on how to engage community representatives and there is an option for consumers to help understand research and the consumer representative role. Often referred to as a ‘capable consumer’, a key attribute of the consumer representative role is to look beyond  personal experience and provide a broad consumer perspective.

What is a consumer advocate?

Advocates represent the broad views and experiences of a range of people affected by cancer. This is particularly important in thoracic cancers where some people living with lung cancer may not be well enough to represent themselves, or may come from small population groups e.g Lung cancer is the most commonly diagnosed cancer in Aboriginal and Torres Strait islanders but they represent only 3.3% of the Australian population with a slightly poorer outcome from lung cancer than non-indigenous Australians.

Consumer advocates need mechanisms whereby they maintain contact with, or are provided with information from, those who have difficulty having their voices heard, and can advocate on their behalf in a culturally appropriate manner. Consumer advocates need to build alliances and networks with cultural organisations where they are able to consult with such groups or be informed of the outcomes of such consultation.