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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Rural allied health mentorship program creates opportunities for students and practice
Melanie Roll, a director and physiotherapist at Gen Health Hamilton, is dedicated to nurturing the next generation of allied health professionals. Gen Health’s support begins with a work experience program for local secondary school students, where they can observe a variety of health services and participate in an annual careers night to explore allied health career pathways.
Upon moving to tertiary education, students are offered placements through a five-week program designed to transition them from observation to supervised practice and ultimately to seeing their own patients. In their final study year, they can apply for the mentorship program, which aids the transition into private practice.
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Misinformation impacts routine vaccines
More significant changes in recent years have been health-related misinformation eroding trust in healthcare professionals, leading to people seeking alternative treatments or avoiding medical advice altogether. This can make it more difficult for healthcare professionals to provide effective treatment and care.
Recent vaccines delivered as part of the COVID-19 response, are having a consequential impact on the uptake of routine vaccines.
Australian Health Journal spoke with Dr Paul Griffin, an Infectious Diseases Physician and Microbiologist at Mater Health, and who has been involved in over 150 clinical trials in the field of infectious disease.
Paul talks about the importance of having reputable sources of information that can used to encourage people to understand what is involved in clinical trials and the roles of vaccines.
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New option for management of high-risk soft tissue sarcoma of the limb
SARC032 is the first completed randomised clinical trial of its kind and has demonstrated compelling evidence to integrate immunotherapy, with the standard treatment regimen of radiotherapy and surgery for patients with grade 2 or 3, stage III soft tissue sarcoma of the limb.
