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.
Provide insights into:
*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:
Dr Kate Laver is an Associate Professor with the College of Medicine and Public Health at Flinders University. She is a past NHMRC-ARC Dementia Research Development Fellow and current ARC Discovery Early Career Research Fellow. Kate works collaboratively with health professionals, patients and the public to design and conduct high quality and relevant research. She develops and evaluates rehabilitation interventions designed to optimise function and quality of life, especially in older people. Kate has expertise in knowledge translation and leading applied translational research projects. She is also an experienced and registered occupational therapist.
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 three years, Chris has been a member of the Southern Adelaide Clinical Human Resource Ethics Committee. As a 12-year survivor of prostate cancer, and 5-month survivor of throat cancer he has also been actively involved in a range of health consumer engagement activities with SAMHRI, Cancer Voices, Peter MacCallum Cancer Centre in Victoria, and a range of individual research projects.
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.
Sturt Road, Bedford Park, South Australia, 5042
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