Consumer & Community Involvement

After 15 years working as an Adult Educator in Australia, Chris has had extensive community engagement experience in health, sanitation, hygiene and water-related issues in Indonesia (10 years), Vietnam and other South Eastern Asian countries (15 years).  With an Honours Degree in Agriculture and a Master Degree in International and Community Development, Chris is well aware of general research models and processes. For the past 4 years, Chris has been a member of the Southern Adelaide Clinical Human Resource Ethics Committee.  With lived experience as a 14-year survivor of prostate cancer, and 2-year survivor of throat cancer he has also been actively involved in a range of health consumer involvement activities with the South Australian Health and Medical Research Institute (SAHMRI), Cancer Voices, Peter MacCallum Cancer Centre in Victoria, and a range of individual research projects. It is a pleasure to have Chris as Co-Chair and we are grateful for his commitment to CAB, expertise in research and the lived experience that he shares.

Miia is an occupational therapist and clinician researcher in the Healthy Ageing stream at FHMRI. Her research focus is on improving care quality and outcomes for older adults, people living with dementia, and their families. She is recognised for her ability to build genuine connections and facilitate open communication among researchers, clinicians, patients, research participants, and the broader public.

Passionate about consumer engagement, Miia has extensive experience in involving consumers throughout the research processes. She has involved consumers in various aspects of the research process, including developing project plans, consulting on grant applications, serving on steering committees, conducting research focus groups, interpreting research findings, preparing plain language summaries, disseminating findings at academic events, and contributing to peer-reviewed publications.

Miia is committed to supporting others who seek to engage consumers in research, believing that her knowledge, skills, and experience align with her dedication to prioritising the interests and needs of the communities we serve.

Bachelor in Music Performance Elder Conservatorium 

Graduate Diploma in Education

Recently awarded Australian of the Year 2022, South Australian Local Hero and the Joy Noble Medal, Monique has been a dedicated Lymphoedema advocate drawing on her own experience of surviving cancer, living with cancer treatment-related lymphoedema as well as caring for a loved one with brain cancer. She was invited as a guest speaker at the 2022 Southern Adelaide Local Health Network (SALHN) research week and the 2023 Clinical Oncology Society of Australia (COSA)/Flinders Cancer Survivorship Conference. Monique’s advocacy was instrumental in the commissioning of a report into lymphoedema in Australia which she was invited to contribute to. This resulted in the recent release of the seminal AIHW report – ‘Towards an estimate of the prevalence of lymphoedema in Australia’. Currently, Monique participates in health research with the Multinational Association of Supportive Carer in Cancer (MASCC) International Delphi Consensus on measures to improve patient outcomes of Breast Cancer treatment-related Lymphoedema as an associate investigator. She is also a member of the PC4 Consumer Advisory Group and the SA Health Lymphoedema Compression Garment Advisory Group. Monique is the former president and patient advocate for the Lymphoedema Association of South Australia. Prior to Cancer, Monique's 15 year career spanned the Education and Public Sector where she held Senior Coordinator, Team Leader and Management roles. It is wonderful to have Monique bring her ideas, experience and passion for advocacy to CAB.

Holding a Master of Engineering (Systems Engineering), Master of Applied Science (Physics) and Bachelor of Technology (Electrical Engineering), Steven’s career includes a background in research, 18 years in academia and 20 years in Defence Science and Technology Organisations (Edinburgh Laboratory).  He has served on various government and commercial boards and committees and worked overseas in the United States for the Department of Defence as well as publishing several professional papers.  In addition, Steven has engaged in his interest in swimming by being a volunteer for 25 years with the South Australian State Swimming Association and the national Australian swimming body. A 10-year survivor of Pancreatic Cancer, Steven is the founder of the SA Pancreatic Cancer Support group and is a consumer advocate for the University of South Australia’s Vascular Biology and Cell Trafficking Laboratory.  We feel incredibly lucky to have Steven contribute his experiences and research knowledge to CAB. 

Nathan is an early-career health behavioural scientist and public health implementation science student. Nathan also works as a senior research officer in the National Centre for Education and Training on Addiction (NCETA). He has previously held behavioural science research roles in the Flinders Centre for Innovation in Cancer (FCIC) as well as the South Australian Health and Medical Research Institute (SAHMRI). Nathan is delighted to represent Higher Degree by Research students on the CAB. He brings experience and a deep personal commitment to working in partnership with consumers and community members across all phases of research projects, including through community co-design and working to disseminate research findings with consumer colleagues. He has also contributed protocol reviews as a consumer panel member himself, and is always interested in ways in which students and early-career researchers can meaningfully include consumer and community involvement in research.

Jean is an early to mid-career research (EMCR) scientist representative on the CAB. Her research includes investigation of cancer biomarkers to improve early detection and treatment outcomes for patients with gastrointestinal cancers. Although early in her career, Dr Winter brings to the CAB many different experiences of consumer involvement and community outreach from over the years. This has included her time as a volunteer liaison officer with Cancer Voices SA to coordinate monthly walks with consumer advocates, research scientists and community volunteers. She was a panel member on the 2022 FHMRI Cancer Retreat Consumer Advisory panel, where she was involved in a panel discussion with other consumers to promote consumer and researcher involvement at FHMRI. More recently, she has connected with the Pancare Support Group in Adelaide to share her team's research and meet patients and survivors of pancreatic cancer. In 2023, Jean established the Bowel Health Service pancreatic consumer group to improve consumer involvement in pancreatic cancer research at FHMRI.

Professor Jon Karnon is the Theme Lead for Healthy Communities with the College of Medicine and Public Health (CMPH) at Flinders University. Jon has undertaken applied economic evaluations in primary care, inpatient and outpatient hospital settings, residential care and community pharmacies. Jon has particular expertise in the use of cost-effectiveness models to estimate time horizons and have developed and published cost-effectiveness models in a wide range of clinical areas, including frailty, cardiovascular disease, ophthalmology and cancer screening. He is also a supervisor for Higher Degree by Research students for Health Economics. Jon has experience in consumer involvement in his own research around the use of health economics to inform government decisions to fund new pharmaceuticals and other health technologies, but also via his previous role as President of the Health Services Research Association of Australia and New Zealand, where he initiated a research to policy program that was based on engagement with consumers to inform the conduct of policy-relevant research. He is also a Deputy Director of FHMRI, and so provides a direct link between CAB and the FHMRI Executive group.

With lived experience of rheumatoid arthritis, bronchiectasis, asthma, Alzheimer's, complex sleep apnoea, macular telangiectasia Type 2 and sepsis, Lyn has been a key consumer representative for a range of projects. She is a health consumer advisor, representative and community board member with over 20 years of experience and has recently co-authored a paper examining experienced-based-co-design (EBCD) to improve care planning for older adults with multimorbidity. She currently represents consumers on the SNAP Global Trial Steering Committee and is Co-Chair of the SNAP Consumer Advisory Group. Lyn was awarded a SPHERE (Sydney Partnership for Health, Education, Research and Enterprise) scholarship to be Consumer Lead on a systematic review of quantitative studies to identify and critically evaluate person-centred care interventions for people with rheumatoid arthritis. Lyn sits on many committees within SA Health (including SAMAC – South Australian Medicines Advisory Committee), the Commission on Excellence and Innovation in Health (CEIH), as well as within the private sector of health. She also sits on the Asthma Australia’s Consumer Advisory Council and their Research Advisory Committee. She is the Chair of Health Consumer Advocates Network SA (Health CAN SA). We appreciate the incredible wealth of experience and knowledge that Lyn brings to CAB.

Helen brings a wealth of experience in policy, planning, grant seeking and analysis after working in government (10 years), non-government (20 years) and private sectors (12 years). She holds an Honours degree in Pure Mathematics and Master’s degree in Applied Social Research, and has been involved in the course development and online course facilitation at the University of South Australia (3 years). Helen has been integral in the establishment of consumer involvement practices in large non-government aged care services and has been involved in several individual research projects. She sits on the Flinders Medical Program Board, Northern Adelaide Local Health Network (NALHN) Strategic Research Council, Registry of Senior Australians (ROSA) Consumer Advisory Committee, and University of Adelaide Animal Ethics Committee (Medical) as a Category C member. We are thankful for the range of technical skills and hands-on experience that Helen contributes to CAB.

Mario has extensive knowledge and experience in Information Technology after 38 years as an IT Technical Consultant for finance and business sectors. He is a qualified Mental Health First Aid Trainer which has aided in his work with the Towards Zero Suicide Project (SA). Mario has been an avid volunteer, event organiser and fundraiser with a range of charities, hospitals, grant committees and community groups for over 25 years. He has been a valued consumer advocate for a range of organisations including research institutes, universities, local health networks, non-government organisations, Women’s and Children Health Network, Breakthrough Mental Health Research Foundation and Flinders Foundation. Mario shares his knowledge and support on the weekly mental health segment on community radio (Radio Italiana 531) and is a multi-award winner for community service (from newspapers, radio stations and financial institutes). We are grateful to have Mario share his knowledge, experience and strong commitment to consumer involvement in his role on the CAB.