LATEST NEWS: 15 April 2025

A record number of consumers joined us for the 2025 TROG Annual Scientific Meeting, as we focused on ways to boost inclusivity, access and consumer collaboration in clinical trials.

We were thrilled that more than 15 consumers from across NSW, Queensland and New Zealand could participate in the Brisbane meeting as speakers, panellists and delegates.

Consumer involvement in the ASM was supported by Bellberry Limited, enabling consumers to participate in workshops and sessions throughout the Meeting.

A session on clinical trial access and inclusivity for unrepresented groups explored ways of increasing trial participation among rural and remote Australians, First Nations people and older patients, who are often excluded from trials.

Mr Karl McKenzie, a Koori Man of the Parundji people and Chair of the Townsville Community Justice Group (pictured below), shared his personal, harrowing story of the racism and abuse he was subject to from childhood, providing valuable insights into experiences endured by First Nations people. `

“You need to understand the power dynamic, and that people might say yes to things they don’t want to say yes to,” he said.

He urged researchers to be clear about why they wanted Aboriginal people to be a part of their research, and to make the effort to build real relationships with communities before putting forward research ideas.

Dr Laird Cameron, a thoracic medical oncologist from the University of Auckland (Waipapa Taumata Rau) described an innovative project called Te Rōpu Kāwanatanga (TRK), in which a group of Māori patients with lung cancer are guiding research priorities and governing lung cancer research in northern New Zealand.

Another highlight of the meeting was the panel session which explored ways to improve partnerships and collaborations between researchers and consumers, facilitated by Prof Sandra Turner, radiation oncologist from Westmead Hospital. (Pictured below: Consumers, panellists and participants in the session)..

The panellists and speakers included:

• Murray McLachlan, consumer representative on the TROG Board and Cancer Voices NSW Deputy Chair
• Ms Lee Hunt, cancer survivor and Cancer Voices representative
• Ms Robyn Leonard, brain cancer consumer representative and Founder/Director of Brain Cancer Australia
• Dr Laird Cameron, Auckland-based medical oncologist and lead of the Te Rōpu Kāwanatanga (TRK) project on optimising immunotherapy for Māori with advanced NSCLC.
• Ms Elana Rahui, New Zealand consumer who has a diagnosis of lung cancer and is a member of TRK
• Mr Levi Rahui, son and support person for Elana Rahui
• Prof Sabe Sabesan, senior medical oncologist at the Townsville Cancer Centre
• Prof Paul Keall, Director of Image X Institute at the University of Sydney
• Dr Jane Ludbrook, Newcastle-based radiation oncologist

The panellists highlighted the need for diversity in consumer involvement in research.

“The big thing you need to realise in research is that there’s not just one consumer who speaks for all groups involved in your research,” Ms Hunt said.

Ms Leonard said that being the sole consumer representative for an organisation or a project could be very daunting. More than one consumer was needed, and it was vital to have a framework and guidelines around consumer involvement in research, she suggested.

New Zealand consumer Ms Rahui (pictured below with son Levi) described how the TRK project had “flipped the power balance”, giving consumers the skills and power to govern lung cancer research activities, and enabling a focus on outcomes that matter to consumers.

She explained the Māori concept of ‘mana’, referring to a person’s sense of authority and recognition of their dignity and authority in decision-making.

“The ‘mana’ sits with the patient,” she said of the TRK project. “The playing field is levelled and the expertise of the patient is recognised as the most important part of the meetings.”

Mr McLachlan urged researchers to take the innovative step of involving consumers as chief investigators or principal investigators on clinical trials, demonstrating true collaboration on all aspects of trial development and conduct.

“This is proving to be very successful – the trick is to get the right consumer,” he said.

TROG President A/Prof Puma Sundaresan said sessions offered valuable learnings on how to achieve greater consumer engagement, co-design and collaboration in clinical trials.

“I feel privileged to learn from your experience and insights” she told the panellists and consumer delegates.