Ensuring inclusion, diversity, equity and patient input in the development of novel drugs and medical devices has become well accepted in health care. However appropriate implementation of these elements has been a challenge for many. Only by implementing these conscious inputs can patient outcomes be improved and health disparities in marginalised groups be addressed.
Australian Health Journal spoke to Gillian Mason, Consumer and Community Involvement Lead at Hunter Medical Research Institute in Newcastle, NSW on this topic discussed at the recent ARCS Conference in Sydney.
Gillian is a proudly disabled and chronically ill health consumer and patient representative who is also a physiotherapist-researcher with more than 18 years’ experience of the health system from ‘both sides of the bedside’. She is passionate about improving access, inclusion and equity in healthcare for consumers and workforce. In 2021 she was one of 25 Australian women to be awarded the inaugural Brilliant Women in Digital Health Award for transforming the ways that people’s lived experience is valued and included in the design of human-centred, digitally enabled, accessible health systems.
The clinical trial sector needs to provide robust processes that ensure trust is built within these communities – and that processes are transparent and inclusive and importantly demonstrate a commitment to ethical and equitable practices.
“Inclusion and diversity are more than just words, they need to be backed up with meaningful actions and considerations of what they truly mean.”
“When we talk about diversity, we’re often centering whiteness.”, says Gillian.
According to Gillian, efforts to improve diversity, equity, and inclusion in clinical trials should address issues of racism, homophobia, and ableism to create a more inclusive environment
She states, ”Everyone who lives in Australia deserves access to high quality health care. They should be able to access these things without a huge burden or expense to them. It’s a human right to access health care.”
Having an inclusive approach to clinical trials is not just a nice thing to do, but it is essential for ensuring that treatments and medical services work for the entire population, rather than just a small group of people.
As Consumer and Community Involvement Lead at Hunter Medical Research Institute in NSW, Gillian manages the Research Volunteer Register and provides strategic advice, education, training and mentorship around consumer and community involvement in all stages of the research process to research teams.
Within the Australian Department of Health and Aged Care, Gillian is also the Deputy Chair of the Health Technology Assessment Consumer Consultative Committee, and a member of the Medical Service Advisory Committee.
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Strengthening Evidence Through Health Research Where Most People Access Healthcare
In February 2025, the Australian Government committed over $22 million for primary care research, including $5.2m awarded to Professor Michael Kidd, Director of the International Centre for Future Health Systems at UNSW and recently appointed Australia’s Chief Medical Officer, to lead the establishment of one of the largest research collaborations in Australia focused on improving primary care.
The Royal Australian College of GPs says a new national multidisciplinary consortium for primary care research is a positive step forward to improve patient care.
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Making clinical trials participant friendly
Clinical trials are essential in developing new, improved, and more effective treatments and interventions. Without trials, researchers and professionals in the field cannot properly determine whether these new treatments and interventions are safe and effective.
The Clinials platform is geared towards patient centric trials and reducing site burden. The aim is to accelerate lifesaving medicines coming to market by connecting participants and researchers. The platform allows participants to come to researchers with their eligibility in hand among other capabilities.
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Landmark brain shape study
For over a century, researchers have thought that the patterns of brain activity that define our experiences, hopes and dreams are determined by how different brain regions communicate with each other through a complex web of trillions of cellular connections.
Now, a Monash University Turner Institute for Brain and Mental Health-led study has examined more than 10,000 different maps of human brain activity and found that the overall shape of a person’s brain exerts a far greater influence on how we think, feel and behave than its intricate neuronal connectivity.
