People with lived experience of disease or ill health hold invaluable knowledge and unique perspectives for medical research.
Cancer survivors, people living with Parkinson's, those managing chronic conditions, people with experience within a health system or support people or carers of a person with a medical condition bring important insights to research that can benefit clinical, health services and basic research projects.
As the 'consumers' of health care, people with lived experience have the expertise of what it is like to have a health condition and interact with health care services. As a result, consumers hold a critical perspective in the process of identifying research priorities, conducting research and communicating findings with the public.
Flinders Health and Medical Research Institute (FHMRI) strongly supports the involvement of consumers in our research. We consider consumers as subject matter experts and value lived experience in consultation on health research. We believe that collaborative research with consumers will enhance the real-world impact of our work. FHMRI offers consumer engagement support and a Consumer and Community Involvement Advisory Board (CAB) to assist researchers and consumers to ensure meaningful and respectful research collaboration.
'Consumers' are people who have used or will use the healthcare system, including support people around them that may include but not be limited to a carer or family member. "Consumers" is a term agreed upon nationally and used in grant application guidelines therefore used within our organisation.
'Consumer engagement' is the involvement of consumers in a range of activities across broad levels of participation as per the National Health and Medical Research Council (NHMRC) and the International Association of Public Participation (IAP2) within health research and the healthcare system.
Your experiences and insights can improve medical research and health outcomes.
FHMRI conducts research projects to expand our understanding of basic science, accelerate medical innovation and promote healthy communities. Consumer involvement in research improves knowledge of health and disease, ensures comprehensive and inclusive perspectives, and can help improve healthcare delivery and policy.
Consumer involvement does not require a professional health background. Consumers are considered the subject matter experts of their lived experience, and your insights are vital to improving medical research and health outcomes.
An evidence-based approach to consumer engagement gives us the understanding of engagement at differing levels or as a spectrum. Engagement will look different for each researcher, research project and topic. The levels fall into five broad categories: Inform, Consult, Involve, Collaborate/Partner and Empower/Consumer-Led. As consumer engagement moves through the levels, the consumer voice becomes embedded in the organisation or team.
FHMRI is committed to meaningful consumer engagement in a way that fits each consumer and researcher to achieve the best outcomes for health research.
Consumer capability
Researcher capability
Consumer capability
Provide insights into:
Researcher capability
Consumer capability
Researcher capability
Consumer capability
Researcher capability
Consumer capability
Researcher capability
*Adapted from: National Framework for Consumer Involvement in Cancer Control, Cancer Australia and Cancer Voices Australia 2011 (Figure 2: Consumer involvement capability, page 9).
Purpose of the Consumer and Community Involvement Advisory Board
To support the development of a thriving research culture at FHMRI that actively engages with consumers and the broader community across the research to translation lifecycle.
The objectives of the Consumer and Community Involvement Advisory Board (CAB) are to:
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.
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.
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.
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.
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.
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.
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.
Zac is an active health consumer advocate and representative with a culturally and linguistically diverse background, who has received in recognition of his volunteering effort to date various accolades such as Global Youth Parliament’s Global Youth Leadership Award for Australia and Disability Leadership Institute's National Awards for Disability Leadership in the rights activism category. He has contributed to many health-related projects conducted by government authorities at national and state levels, universities and NGOs. Furthermore, besides being the founder of Diet to Save Earth, he is affiliated in various capacities with a diverse range of organisations at municipal, state, national and international levels for different causes mainly in consumer representation in healthcare; disability and carer support; climate change; youth empowerment; diplomacy and international affairs; and multicultural and ethnic advocacy.
Consumer and community involvement in research has evolved over the years, with evidence showing the benefits to research outcomes and translation when including meaningful consumer engagement. The evidence also shows an additional benefit of including consumers in the initial research design, often resulting in higher levels of involvement. Researchers can benefit from the added expertise of a consumer with a lived experience which can set your project apart from others.
Working with consumers is new for many researchers, no matter how far into their careers.
For this reason, FHMRI Research Development and Support (RDS) offers consumer engagement support advice. Most funding bodies now include the requirement of engaging consumers in research to qualify for funding. Funding bodies will look at how and at what level you engage with consumers.
Perhaps, you're not sure where to start. Or you are working with consumers, but you are not showing that work in your applications. Could you use lived experience case studies to show how vital your research is for those it affects most? We can help you learn to engage with consumers in meaningful ways.
In October 2021, I met with Dr Savio Barreto at Flinders University. It was an informal meeting facilitated by the RDS Consumer Engagement support officer in order to provide a layperson's experiences of being a patient or carer in the hospital system. I was hoping my experiences going through diagnosis, treatment, palliative care and finally the death of my husband from Pancreatic Cancer may be helpful to researchers in this field. George proved to be a very caring, empathetic surgeon and we were able to chat very easily at that meeting. He later followed up the meeting by providing me with the outline of a survey he wished to use with his patients. I then provided him with some emailed feedback comments. I am not sure that I was of any help to him but he assured me my input was useful and I came away from the experience feeling valued and positive that research is in very capable hands.
Consumer engagement early in the research planning process ensures that the patient/consumer perspective on the priority and practical application of the research is considered. Similarly, consumer involvement provides the opportunity to check the understanding of language being used with research participants and the general public.
In the Precision Medicine Group, we believe that the consumer voice is central to conducting and shaping impactful research. The consumer engagement support officer has been transformative in facilitating structures to expose our group to informed consumers to achieve research that will change lives. This includes invitations to consumer walks, establishing engaged consumers for our advisory committee, or even grant reviews. The consumer engagement research support role is immensely valuable to Flinders researchers.
I really appreciated [the consumer engagement support officer's] input on this - it made a better grant. These are really competitive grants and to be honest, although I loved our idea, I thought we had slim chance, so you can imagine my surprise finding out we won the award. Thank you to the team at RDS for helping to frame the consumer voice and engagement in this application to stand out amongst this competitive process.
FHMRI's Consumer Engagement is facilitated by the Consumer Engagement Support Officer.
Please get in touch if you are a consumer or researcher looking to get involved in research collaboration.
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