What is consumer involvement?
Consumer Involvement is where consumers. patients, carers and community representatives actively work with researchers and research organisations to help shape clinical research.
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 firstname.lastname@example.org 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.
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.
Alison Bolton is a consumer representative and midwife. When she was diagnosed at the age of 48 with NSCLC – ALK positive, she became involved with consumer advocacy and contribution. She has worked with LFA on raising awareness, lobbying parliament and working with local MP’s to increase understanding and support for lung (and rare) cancer. Alison has completed a Graduate Diploma in Public Health, introducing her to a professional role in clinical trials coordination in maternity care. Alison has undertaken consumer training courses provided by Cancer Qld, Health Consumers Qld and Cancer Australia, and completed a certification in Good Clinical Practice. Alison has firsthand experience of the ethics and governance system for clinical trial conduct, and in coordinating clinical trials within a hospital. Alison is a confident public speaker, but also takes the time to listen to lung cancer patients and their concerns, ensuring that she can represent the community.
Alison has a particular interest in early intervention and prevention strategies, and research promotion, linking consumers to the right trial. She is also interested in novel treatments and concept development. She lives in Brisbane, with her 3 sons, husband and enjoys swimming in a non-competitive way.
Susan McCullough, OAM, has been a patient research advocate for lung cancer since her recovery from a lobectomy of her right lower lobe, due to a ‘lucky find’ of adenocarcinoma in March 2003 at the age of 47.
Sue brings a wealth of consumer involvement, advocacy and patient support experience to her TOGA position, which was recognised in 2019 by the award of an Order of Australia Medal. Initially, Sue formed a face-to-face support group for lung cancer patients at Jacaranda Lodge Cancer Support Centre in 2004, but soon moved into advocacy and research, completing many advocacy, communication and support training courses at Cancer Council NSW, and becoming lung cancer consumer representative for NSW Cancer Institute’s Lung Cancer Research Group.
Sue was a founding consumer representatives for Australasian Lung Cancer Trials Group (the predecessor to TOGA) and is now a member of both the TOGA and Tran-Tasman Radiation Oncology Group (TROG) consumer panels, as well as a member of Cancer Australia’s Lung Cancer Advisory Group. Sue has completed two years of the IASLC’s STARS advocacy training program, which teaches consumer research advocates how to interpret lung cancer research, and is now a mentor to others completing the program.
Sue is passionate about new treatment options, screening for early discovery of lung cancer, helping people living with lung cancer enjoy longer, healthier lives, and is ultimately hoping for a curable disease. Sue lives in Sydney and has been involved in the higher level of Baseball scoring in Australia, volunteering for over 35 years. She loves her garden and would like to ‘escape to the country’ one day.
John Cannings, OAM, is a retired lawyer and consultant having been involved in the Health and Pharmaceutical sectors for over 30 years, including as an investigator/quality assurance partner in a number of Research and Development projects for the Federal Department of Health.
John was diagnosed with a rare form of NSCLC in 2014 which led to him making a private submission to Pharmaceutical Benefits Advisory Committee (PBAC) for the listing of a targeted tyrosine kinase inhibitor (TKI) on the Pharmaceutical Benefits Scheme (PBS). This resulted in him also appearing before a Senate Inquiry into access to new, innovative and specialist cancer drugs in Australia. Since being diagnosed John has been involved in a number of community and patient projects and representing patient views and perspectives including whilst as a Director of Rare Cancers Australia.
John is particularly interested in the future potential for genomics and proteomics for both the diagnosis and treatment options for cancer and is currently a consumer representative with Australia Genomics, NSW Health Genomics Steering Committee and ProCan.
With TOGA John wants to ensure that consumer priorities and perspectives are reflected in in each stage of the research.
John was awarded the Order of Australia Medal in 2010 for services to the community and is married with 2 children and lives in Sydney, Australia.
Lisa Briggs is a young mother, and allied health professional; Osteopath and Exercise Physiologist, who has been living with Stage IV Non Small Cell Lung Cancer (NSCLC) harbouring the ALK mutation since 2014.
She is a member of the TOGA Scientific Committee, Rare Cancers Australia (RCA) Advisory Board, Cancer Australia Lung Cancer Advisory Group (LCAG) and Cancer Council Victoria Community Reference Committee (CRC) and Victorian Lung Cancer Registry (VLCR) Steering Committee. Having been on a participant on a clinical trial for 3 years, Lisa has experienced first-hand the impact clinical trials can have on improving outcomes and is passionate about partnering with researchers to help co-design clinical trials that are both patient centric and innovative.
In 2020, she was selected as a participant of the International Association and Society of Lung Cancer (IASLC) Patient Research Advocates Supportive Training and Advocacy in Research (STARS) program and has since been invited to join the International Society of Liquid Biopsy (ISLB) as their patient advocate.
Lisa has a special interest in personalised treatment approaches, Comprehensive Genomic Profiling (CGP), and Liquid Biopsies, using innovative technology to advance care, improving the patient experience and incorporating supportive care and allied health through clinical trials to help improve quality of life. Lisa hopes that her voice will help provide perspective, raise awareness, and drive change in the future that ultimately leads to improved outcomes for all.
Alexandra Golledge is a patient research advocate with a particular interest in teletrials. She works as a senior administrator in cardiovascular research at James Cook University. Her diagnosis at the age of 31 with a rare form of lung cancer sparked her interest in the field, and her drive to create better outcomes for patients through advocacy and raising awareness of rare cancers.
Alexandra served for two years as co-chair of the Lung Foundation Australia’s Patient Advisory Committee, and presented at both the Australian Lung Cancer conference in 2018 and the TOGA symposium in 2021. She has participated in the Lung Foundation Australia’s campaigns fighting the stigma associated with lung cancer, and spoke at an Astra Zeneca global workshop.
Alexandra has also taken part in several philanthropic campaigns for the Peter McCallum Cancer Centre. She has recently recorded an episode entitled ‘Redefining Survival in Lung Cancer’ for the TOGA podcast series and sits on the TOGA consumer advisory panel. She is based in Townsville, North Qld and in her spare time enjoys walking her two cavoodles with her husband and son.
More information on consumer representation
Australian Clinical Trials Alliance. Consumer Involvement and Engagement Toolkit.
Cancer Australia and Cancer Voices Australia, 2011. National Framework for Consumer Involvement in Cancer Control.
National Health and Medical Research Council 2016. Statement on Consumer and Community involvement in Health and Medical Research.
Telethon Kids Institute Help Shape our Research.