Consumer Involvement

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.

Why 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.

TOGA recognises the growing emphasis on consumer involvement within the research grant application process. To maximise the impact of this collaboration, TOGA prioritises the inclusion of consumer representatives from the initial design stages of research projects. This proactive approach ensures that the patient experience is central to the research question and methodology, fostering the development of trials that are more relevant and impactful for those affected by thoracic cancers.

All TOGA clinical trial concepts are reviewed by consumer representatives, either through TOGA’s Consumer Panel, 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.

What is the Consumer Panel?

The Consumer Panel are consumers and TOGA community members who provide invaluable insights that can significantly enhance research design and ultimately improve patient outcomes. Consumers bring a unique perspective, informed by their firsthand experiences with thoracic cancers.

How do I get involved?

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.

The Consumer Panel at TOGA fosters a diverse and inclusive environment, welcoming individuals from a wide range of backgrounds and experiences. If you are interested in contributing your unique perspective and lived experience to shaping the future of thoracic cancer research, we encourage you to contact us at info@thoraciconcology.org.au to learn more about this rewarding opportunity.

To ensure all Consumer Panel members are empowered to actively participate, TOGA offers a training program. This program equips participants with a strong foundation in thoracic cancers, clinical trials, research design principles, and effective methods for providing constructive feedback on research documentation. This commitment to ongoing education fosters a collaborative environment where consumer voices can have a significant impact on the development and execution of meaningful research initiatives.

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

How do I get consumer involvement in my research?

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.