Consumer and Community Research Network

Providing advice about what is working and not working, and plans for the future. Topics may include research priorities and how to recruit participants and disseminate results via workshops or forums.

Being informed by researchers. Information provided may be about health conditions, rights and responsibilities, health services or programs. This may be in the form of brochures, videos, community stalls or websites.

Being partners in shared decision making about your care and health services via committees, workshops, forums and working groups. 

Working, learning and reflecting together to plan and deliver activities, resources or services. This can be referred to as 'consumer-led’ research.

Giving us feedback. This could be about services, experiences, resources or programs.  Feedback may be via conversations, focus groups or surveys.

Trialling a new program, service, product or treatment type. This allows researchers to collect data on new ways to deliver health care or methods of treating certain health conditions.

About Lorna's research

 My research is qualitative, which means I’m interested in the “why”.  Specifically, my research is focused on therapeutic reaction and its application as a mental health intervention for people with mental illness, and also how it enhances clinical placement experiences for students studying a health degree (predominantly nursing). The program (intervention) of focus is called Recovery Camp

I want to understand the lived experience of this program in these groups of people.  

Importance of consumers involvement in research

Consumers are truth tellers and lived experience brings a wealth of knowledge. My favourite data collection technique is individual interviews – where people can get down to tin tacks and we can engage in an honest conversation.  I believe lived experience should be higher up the ranking of research evidence hierarchy. Who best to know what it's like to live or experience something than the very people who are living it. 

Consumers attributes 

Truth tellers - people who can bring a great degree of authenticity to research, who aren’t afraid to ‘tell it like it is’ and who want to contribute to better outcomes. I like working with consumers “that are real”.  

Research is the foundation of evidence, and evidence can bring about change. I couldn’t imagine doing research that doesn’t involve people in some way. People with mental illness are often marginalised and stigmatised. If I can go some way to elevate their voice, then I feel that I am making a contribution. If you listen to consumers, you might just learn something. 

To get involved in research projects like Lorna’s, register using our online form.

MORE ABOUT Professor Lorna Moxham

About Kelly's research

My research is focused on chronic kidney disease and how we can modify our lifestyle to help manage the condition and the side effects of treatments.

Importance of consumers involvement in research

Consumers are the inspiration for the research I do. Consumers have informed so many aspects of our work from the initial ideas (for example – what is the best diet for people doing peritoneal dialysis) to the recommendations we made (e.g. would consumers really want to take that volume of tablets). Consumers have also worked with us to help give guidance on how to translate the research findings into practice. I have also co-authored research papers with consumers, and this has been really rewarding seeing their work get published. 

On the flip side, from a personal perspective I have also contributed as a health consumer myself and this has been really rewarding. This has made me conscious to ensure that there is lots of onboarding and preparatory discussions for consumers as research is a foreign world. Don’t be afraid as a consumer to ask lots of questions. The more consumer input you have along the research process – the better. 

Consumers attributes 

The consumer contribution does not have to be large or onerous. I am happy to work with all consumers no matter how much they can contribute - it all adds up being valuable. I am lucky to have worked with consumers of all ages – young kids to older people, and with many amazing stories to tell and things to contribute. 

Consumers help remind researchers about what is important and why we do what we do – we would love to have you involved in our work!

To get involved in research projects like Kelly’s, register using our online form.

MORE ABOUT
Associate Professor Kelly Lambert

About Yasmine's research

My research is presently focused on a fellowship that I hold with MS Australia and addresses the need for nutrition considerations for the management of multiple sclerosis (MS). For this work we are exploring the perspectives of researchers, clinicians and people living with MS using various study types. The studies include a critique of the tools that can be used in research studies and applying these to existing studies, exploring the nutrition needs of healthcare professionals who work in MS for the development of education packages and an exploration of the nutrition wants and needs from people living with MS which then feeds into a clinical trial study that we will run in 2025. For my research I am lucky enough to work with an amazing team (Eatright MS team) of PhD candidates who each bring their own experiences to the research, and each engage with our consumers to inform their research as well.

Importance of consumers involvement in research

All of the work we do in our research in the Eatright MS team has the end-user, or the consumer, at the forefront. For us, these consumers are most often people living with MS. To ensure that we aren’t driving our research from researcher priorities but rather ensuring our work comes from consumer priorities, we have created and continue to engage with a consumer group that we regularly liaise with. This consumer group shares with us their ideas for MS management generally and in relation to new concepts that have arisen within the MS community. We don’t limit our engagement to study ideas but ensure that we continually engage with our consumers for the design of the studies we develop, often creating them together, the tools we use and the interpretation and sharing of the results. Our consumers work with us along the whole research journey.

Consumers attributes 

For our team, we have a targeted consumer group which includes people living with all types and stages of diagnosis of MS from across the country. We had originally planned to only have a local (Illawarra) group, but interest grew very rapidly meaning we now have a diverse range of consumer voices. Due to the range of experiences of people living with MS we prefer to involve a group of consumers so that the sharing of experiences can resonate through our research. 

Lived experience 

As a person living with MS myself, I find that engaging with other consumers from the MS community helps our team to understand the evolving challenges. As a group we have shared stories that have informed research practice but also used our meetings to share stories and learnings with each other and even celebrate important milestones. The role of a consumer is highly varied, and each person is their own expert of their living experience which for me highlights the value of working with consumers.

Current projects

We will soon be seeking consumer involvement in the resource development and recruitment practices for our clinical trial.

To get involved in research projects like Yasmine’s, register using our online form.

More about
Associate Professor Yasmine Probst

About Marie's research

I am a biomedical cancer researcher at Molecular Horizons, UOW. A key focus of my research is to better understand the biological processes that contribute to the invasion and spread of cancer around the body, a process known as metastasis, which is the leading cause of cancer-related deaths.

My lab also utilises patient tumours to identify and validate biomarkers of metastasis and actionable therapeutic targets in cancer. We then test these in patient-derived cancer cell lines.

Importance of consumers involvement in research

I have been very fortunate to have had long-term support and advocacy from local charity group Illawarra Cancer Carers (ICC). This has strengthened community recognition and helped develop strong links with cancer clinicians in the local health district. For example, many of my projects are co-led by clinicians with a view to testing potential new cancer treatments as needed for proof that these are worth taking forward to clinical trials which the clinicians would then run.

Also, in the highly competitive government funding landscape consumer groups such as the ICC have stepped in with financial support towards PhD students, research fellows and assistants, which has been instrumental in maintaining research momentum. Members of ICC are also acting as Associate Investigators on government grant applications, providing advice on the lay summaries and general research direction of projects. For an increasing number of funding agencies it is now also a requirement to have consumer involvement so the importance of these relationships cannot be understated.

Consumers attributes 

As our research is  very lab-bench focussed few consumers feel they are qualified to assist in research proposals and directions. On the contrary, if we can’t communicate the importance and relevance of what we are trying to do to a lay audience and convince them this is a worthwhile project then maybe we need to rethink what we are trying to achieve. So, we value having consumers input into our research discussions to question what we are trying to achieve and having them as co-investigators on our grant applications.

Lived experience 

To prospective consumers, please do not hesitate to get involved in any way you can. You do not need to be a scientist to have valuable suggestions. Anyone with direct or indirect lived experience with health related matters has a great deal to contribute to biomedical research.

To get involved in research projects like Marie’s, register using our online form.

MORE ABOUT
SENIOR PROFESSOR MARIE RANSON

Your opinion matters to us. It is your right to share your experiences and contribute to improving the quality of health care and services. Being involved as a consumer provides you with an opportunity to partner with researchers and engage in conversations. This will guide improvement to how health care and services are provided to you and your community.

Register your interest via our online form. When you sign up you will also have the option to subscribe to our newsletter and respond to any project that is of interest to you.

No, registering as a consumer is free. There are no costs associated with joining or using the UOW Health Innovations Consumer & Community Research Network.

The information you choose to provide will be collected and securely stored in line with our privacy policy. This information will only be accessed by relevant members of the Health Innovations team to contact you regarding opportunities. We will not share your information with anyone outside our organisation unless we have your permission. Researchers will only be provided with your name and contact details. No further information will be provided without your permission.

For further information about UOW's commitment to protecting your privacy, please visit the UOW Privacy webpage.

It is your choice on how you want to become involved.  Different projects involve different roles. You will be provided with an overview of the role and responsibilities when you contact a researcher about participating in a project.

The time commitment depends on the project. Some projects involve a one-off commitment while others involve an ongoing regular commitment. The researcher will provide you with an estimated time commitment when you contact them about participating in a project.

You can be involved in as few or as many projects as you would like. 

This depends on the project. We have various opportunities available, both in person, online, or a mixture of both. The researcher will provide you with this information when you contact them about participating in a project.

No, we are interested in partnering with consumers from across Australia. However, please ensure you understand the location and/or travel commitments of a project before agreeing to participate.

Sometimes – it depends on the project. The researcher will provide you with this information when you contact them about participating in a project. 

No. However, some projects may require specific skills which will be outlined by the researcher.

Yes. The researcher will provide you with this information when you contact them about participating in a project.

We understand circumstances outside of your control can happen. Please contact us with as much notice as possible to let us know of your absence. You can do this via emailing the researcher who organised the commitment with you.

Please email us at uowhi-network@uow.edu.au and a member of our team would be happy to help provide you with further information or answer any questions you may have. 

Please email our team at uowhi-network@uow.edu.au and request to be unsubscribed and your information removed from our platform.