On the 19th of May, UNSW Medicine & Health’s Clinical Research Unit hosted a compelling event to mark International Clinical Trials Day which is on the 20th May 2025, bringing together researchers, consumers, and health leaders to explore this important topic.
The session underscored the growing recognition that involving people with lived experience is not just beneficial—but essential—for meaningful, impactful research.
Moderated by Janelle Bowden, the panel featured voices including Emma Tinkler, a Consumer living with and advocating for Parkinson's Disease and Multiple Sclerosis; Robert Monaghan, inaugural Manager of First Nations Health Research at the Kirby Institute; Steven Marsh, Consumer Chair at NeuRA; and Karena Conroy, Manager of the Consumer and Community Involvement Program at The George Institute. Together, they shared practical strategies and personal reflections on building authentic partnerships in research.
“Involving consumers from the start leads to more inclusive trial designs, better recruitment, and outcomes that actually matter to patients,” said Bowden. “It’s not just about ticking a box—it’s about doing better science.”
Emma Tinkler added a powerful perspective:
“If you’re doing research on Parkinson’s, why wouldn’t you talk to someone who lives with it every day? We want to be part of the solution.”
Robert Monaghan emphasised the importance of trust and cultural respect in engaging First Nations communities: “We need to move away from doing research on people and start doing it with them.”
The event also tackled practical challenges, including how to find the right consumer partners, how to sustain relationships beyond individual projects, and how to ensure ethical engagement even when funding is limited.
Karena noted,
“Building genuine relationships takes time, but the long-term benefits for both researchers and communities are immeasurable.”
The session concluded with a clear message: consumer involvement is not an add-on—it’s a cornerstone of impactful, inclusive, and ethical research.
