Consumer and Community Advisory Committee

Sam brings a consumer perspective and social justice approach to mental health research, education, and service design. She brings lived expertise to mental health research governance. Applying the tenet of 'nothing about us without us', Sam advocates for meaningful participation at all levels of study design; academic tenure by people with a lived experience of mental distress; and sharing power between researchers, academic clinicians and people who use mental health services to increase the effectiveness of research processes and outcomes. Sam is a lived experience educator and facilitator with extensive experience in consumer advocacy, peer education and consultancy roles in NSW and nationally. She completed the Primary Health Care Research, Evaluation & Development program and is a member of the Independent Advisory Board for the ALIVE National Centre for Mental Health Research Translation.
Sam says: “As Deputy Chair of the CCAC, I hope to embed research partnerships with the people most affected by the research and ensure that mental health research agendas are shaped by people with a lived experience of mental distress and recovery.”

Sue is a health promotion advocate dedicated to improving the health and wellbeing of all people. She has experience in leading organisations that fund research, design research strategy, and communicate about research to consumers. Throughout her career, Sue has focused on health for the community and has expertise in communications, education, and organisational development. She currently leads the Zero Suicide Institute of Australasia which aims to support the healthcare system understand and more effectively manage those who are vulnerable to suicidal behaviour. Sue is a Director of Good2Give and ShareGift Australia, a member of Chief Executive Women and the Centre for Social Impact Sydney Advisory Council. She is formerly the CEO of the National Breast Cancer Foundation (10 years) and Suicide Prevention Australia, a director of Research Australia and Chair of Macquarie Community College.
Sue says: “As a member of the CCAC, I hope to ensure the inclusion of service users in research processes to better match services to consumer needs.”

In 2003, she lost her son Preston, aged 2½ years, to sepsis, though sepsis was not communicated as the cause at the time – he had been suffering from viral pneumonia. Mary consequently collaborated with the Mater Foundation to establish the Preston James Fund which enabled significant advancements in respiratory research and practice for children. Ten major areas of research were supported over eight years. Mary is a member of several health committees and boards (local, state, and national) and works closely with Sepsis Australia. She shares her experience and professional expertise to raise awareness and help improve diagnosis, treatment, and outcomes for patients who develop sepsis. Mary is a bilateral breast cancer survivor who underwent chemotherapy and had a double mastectomy (2018-19). Mary is a professional business communication practitioner and consultant with over 30 years of experience. She is currently the director of her own communications and engagement company.
Mary says: “AAs a member of the CCAC, I hope to contribute to effective consumer engagement strategies and to support The George Institute to become a leader in the practice of consumer involvement in health research.”

Fiona has lived experience of a vascular condition affecting the spinal cord, and carer experience with family members diagnosed with cancer. Over many years, she has contributed the consumer and carer perspective, initially to medical workforce committees and more recently with Safer Care Victoria, and St Vincents Hospital, Melbourne. Fiona is a member of the Consumer Health Forum and Cochrane Consumer Network and has been a Consumer Buddy at the Walter and Eliza Hall Institute of Medical Research. She is a former health and biomedical researcher who worked for the Ludwig Institute for Cancer Research (1987-2003). She has a PhD in Injury Epidemiology and currently works part-time as a medical writer. She brings her knowledge of the research process, together with experience managing research committees and lived experience of healthcare in Melbourne.
Fiona says: “As a member of the CCAC, I hope to foster research informed by the lived experience and contribute to better health systems.”

Brian is a stroke survivor, who sustained a stroke in 2016. Since this time, he has been involved in stroke advocacy and clinical research projects, as an investigator and a consumer with lived experience. He shares blogs on social media about various aspects of stroke and stroke rehabilitation. In 2021 he received the Stroke Foundation of Australia’s ‘Improving Life After Stroke’ Award in recognition of his efforts in this area. Brian retired in 2012 after a career spanning 3 decades in corporate communications in the Australian Financial Services Industry. Late in his career he became involved in Organisational/Workplace Cultural Programs, Management Consulting, Project Management and Change Management and would regularly speak at conferences in Australia and abroad. Since having his stroke, he now regularly shares his stroke story with stroke clinicians and students and incorporates his broad corporate experience to share his insights on service delivery.
Brian says: “As a member of the CCAC, I hope to develop and nurture the integration of ‘lived experience’ into The George Institute’s mission and strategic vison.”

John is a carer advocate whose first exposure to the health sector was in palliative care in 2016 when his late wife reached the end stage of her illness (pancreatic cancer). Since that time, he has become involved in a range of activities with institutions covering the areas of medical research, clinical trials, general medicine, palliative care, and voluntary assisted dying. John is a member of many health committees and advisory groups at the local, state, and national levels – the Consumer Health Forum among them – including the Safety and Quality in Health and Digital Health Special Interest groups. He takes part in local and national patient, carer and consumer registers and gets involved with research studies of interest. John also brings more than 30 years of IT experience, including over 20 years of applications testing.
John says: “As a Former member of the CCAC, I hope to provide input to facilitate improvements in clinical trials.”

Lyn is a sepsis survivor who advocates strongly for all clinicians to ask themselves the question, “Could it be sepsis?” when faced with a deteriorating patient. Lyn is a consumer advocate involved in state, national and international committees. She is Chair of the Health Consumer Advocacy Network (South Australia), and a member of the Consumers Health Forum, COTA and the Commission on Excellence and Innovation in Health’s Community of Consumers. She was recently appointed to The Aged Care Council of Elders. Lyn has been involved in research as a Consumer Advisor and co-designer for several years and believes consumers should be involved in research from the start of the project. She is passionate about consumer-centred care in every part of the health system, both public and private, and from primary through to tertiary care. Lyn works with her peers to ensure safety and quality within the consumer health journey.
Lyn says: “As a member of the CCAC, I hope to enable consumers to become co-designers in research.”

Prabir lives in Melbourne and runs a charitable foundation that works with street and tribal children in the eastern states of India. He advocates for the primary and secondary education, health, and well-being of under-privileged and displaced populations, with a current focus on young and elderly people. He has over 20 years of experience assisting a range of government and non-government organisations to undertake evidence-based decision-making. He brings a deep understanding of consumer and community involvement principles and experience in public health, national health program design and monitoring, evaluation methodologies, impact assessments, research, training and facilitation, organisational strategy, business plan and operational plan development in a range of international and domestic contexts. He has been involved in demand-driven, multi-year National Health programs and frameworks, Participatory Action Research, and is experienced in providing input into, and review of, research grants in Australia.
Prabir says: “As a member of the CCAC, I hope to contribute to the voice of the community and consumers in their health seeking behaviour.”

Dr. Shyamsundar Muthuramalingam (Shyam), holds a PhD and serves as the Manager for Consumer Engagement and Health Promotion at the South Australian Prison Health Service. His daily role involves co-designing health service design and delivery with people in custody, emphasizing health promotions across seven state-run prisons in South Australia. His commitment to consumer engagement was sparked by his personal battle with kidney disease. Shyam is at the forefront of devising, executing, and assessing consumer and community involvement initiatives across influential bodies such as the Australia and New Zealand Dialysis and Transplant Registry, South Australian Health and Medical Research Institute, and Kidney Health Australia. As a consumer member of the Australian Medical Council, he represents the community voice in accrediting medical degrees. Notably, his appointment to NHMRC's Consumer Statement Advisory Committee reflects his commitment to refining the role of consumers in health and medical research.
Shyam says: “As a member of the CCAC, I hope to embed consumers across all stages of research at The George Institute.”