In today's health landscape, consumer involvement is crucial for high quality and impactful clinical research. Funders now recognise the importance of including consumer voices in grant applications. While meaningfully interweaving community needs and lived experiences into research can be challenging due to factors like rigid organisational processes and knowledge gaps, researchers are increasingly looking for innovative strategies and best practice approaches to bridge these gaps. This growing commitment is paving the way for greater levels of involvement and more effective partnerships between people with lived experience and health researchers.
In celebration of International Clinical Trials Day, UNSW honours the dedication and impact of all clinical research professionals and participants. The Clinical Research Unit wants to amplify this message by fostering collaboration across the UNSW clinical research network and facilitating improvements in consumer involvement in health research.
In a discussion led by Janelle Bowden, Community & Consumer Research Consultant who advocates for participant engagement in the research and therapeutics industry, experts from a range of research areas, and lived experiences will offer guidance on best practices and strategies to integrate lived experiences into research activities.
Agenda:
This event is in-person only. The food is on us! All dietary requirements will be considered.
Those who can't attend in person can register for an on-demand audio recording ticket, and the recording will be circulated after the event.
Janelle Bowden, PhD, has 20+ years of experience working in and around clinical trial operations in Australia and overseas, for sponsors, sites, and as a consultant. She has a passion for improving efficiency and equity of access to research opportunities, and believes in the value of consumer involvement in research to help address roadblocks, reduce waste and improve the relevance of research, especially clinical trials, to the people it matters to. Janelle is founder of AccessCR, a social enterprise providing services to research-engaged and consumer organisations around clinical trials and consumer engagement and involvement in research. This work funds activities aimed at building capacity, connections, support and advocacy for the needs of people looking for, taking part in and contributing to medical research and clinical trials – a group she calls the Community and Consumer Research Workforce (CCReW).
Emma Tinkler regularly shares her experience of living with both Multiple Sclerosis and Parkinson’s, the challenges of misdiagnosis, and the mind and body-based interventions she has found helpful.
“Learning to live with PD and MS is like trying to tame a beast. It has its ups and downs and is constantly changing. Mentally you have to be extremely resilient and strong. You also have to make friends with the beast – because ultimately it is part of you.”
Dr Karena Conroy is an experienced health researcher and program manager/lead with a PhD in Health and a background in the social sciences. She currently leads a program focused on developing and implementing consumer and community involvement in health research at The George Institute for Global Health. The remit of this Program is to develop organisational strategies, structures, and processes that facilitate the systematic engagement and meaningful involvement of consumers and community members in health and medical research.
Robert Monaghan is a descendant of the Bundjalung and Gumbaynggir Nations, with family from North Coast NSW. He has over 25 years of experience in the Aboriginal community-controlled health sector.
As the Kirby Institute’s inaugural Manager of First Nations Health Research, Robert leads the development of systems, policies, and a cultural framework for First Nations health research. He chairs the First Nations health research advisory committee and is a member of the Executive Committee.
Since 2014, Robert has worked as a Project Officer with the Kirby Institute’s Surveillance and Evaluation Research Program. He is completing a PhD focused on improving access to culturally appropriate health services for Aboriginal men. His work includes implementing Indigenous research methodologies like yarning circles and men’s gatherings. Robert earned his Master of Public Health at UNSW Sydney in 2018.
Robert has a diverse range of learnt and lived experiences, working with communities passionate about equality for Aboriginal people and culture. His career has exposed him to various client groups, service models, and stakeholders, enhancing his skills in communication, innovation, management, research, and technical expertise.
Steve is an experienced lay member of research ethics committees having been a lay person on the NSW Population and Health Services Research Ethics Committee between October 2015 and September 2018 and has been on the UTS Health and Medical Research Ethics Committee since September 2019.
Steve has had significant exposure to the NSW health system having had five major spinal surgeries and two surgeries of the foot, together with their associated rehabilitation and ongoing pain management programs. His first spinal surgery was in 1992 with the other six operations occurring between 2013 and 2023. These surgeries took place across four different hospitals within Sydney.
The hospital and rehabilitation setting has been a large and important part of Steve’s life over the last eleven years. It was a key motivating factor for joining the UNSW Health Systems Research Executive Committee in July 2023 as a Consumer Representative as he is passionate about contributing to the UNSW Health Systems Research Theme’s objective of improving health care services.
In April 2024 Steve was appointed as Consumer Chair of the Consumer & Community Involvement Portfolio for the Centre for Pain IMPACT at Neuroscience Research Australia. His role is to oversee the development and implementation of the Consumer and Community Involvement strategy across all group research activities, including 8 randomised controlled trials.
In December 2024 he became a member of The George Institute Australia’s Consumer and Community Advisory Committee. The Committee provides consumer leadership at the Institute and works with senior researchers and other Institute leaders to achieve the goal of embedding consumer and community involvement into all relevant research and research-related activities.
