Videos: Statement on Consumer and Community Involvement

Professor Steve Wesselingh

Listen to NHMRC CEO, Professor Steve Wesselingh, discuss consumer and community involvement at the Queensland Aphasia Research Centre (QARC)

Video transcript - Professor Steve Wesselingh

00:00 Professor Steve Wesselingh 
What if words suddenly disappear, hearing them, saying them, writing them, reading them. Imagine if they no longer made any sense for Australians living with aphasia. This is their daily reality.

00:17 Professor Steve Wesselingh 
The Queensland Aphasia Research Centre, they have been doing amazing work in understanding the needs of people with aphasia and essentially co designing their work with the community and people affected by aphasia.

00:30 Professor Steve Wesselingh 
NHMRC believes consumer and community involvement is essential for high quality research, and we know that research where the consumers and the community involved, right from the beginning, is better research and has better outcomes and more impact.

00:48 Professor Steve Wesselingh 
The consumer statement sets the framework and expectations for consumer and community involvement in research. We know how important it is to get that right, because if we have high quality consumer and community involvement in research, we'll have great health outcomes. If the consumers have been involved in the whole pathway, they can really be helpful in explaining that process, product, policy or drug and really move those discoveries into care as quickly as we possibly can.

End of transcript.

Dr Elizabeth Deveny

Dr Elizabeth Deveny, CEO of the Consumers Health Forum of Australia (CHF) describes the value to consumers and community in having a Statement on Consumer and Community Involvement in Health and Medical Research (the Statement)

Video transcript - Dr Elizabeth Deveny

00:00 Dr Elizabeth Deveny  
Imagine that you have a child, and suddenly you discover they've got a very rare condition. Now you're talking to clinicians, it's very technical. You suddenly need a whole lot of information and a whole lot of skills you don't have. Where do you find them? You find that in organisations like ours and many others who support communities at this time.

00:25 Dr Elizabeth Deveny  
CHF is a membership organisation. We're the national peak body for health consumers. We work with individual consumers, as well as with community groups and national organisations. We started in the 1980s during the HIV AIDS crisis. Back then, people were being left out of life changing decisions, and we've been working to change that ever since, our role is simple but vital. We advocate for safe, affordable health care that Australians can access when they need it, and that the people using the system have a real say in how it works. People often come to us with an interest because of a personal experience and over time, we hope that the resources we provide them help them to build their confidence and their capacity to be able to advocate themselves in research environments.

01:19 Dr Elizabeth Deveny  
Today, we focus on making sure that health policies and research include the people most affected. If research is publicly funded, it should reflect the diversity of the public voice. Consumers want to help shape the research questions and improve the research design, ensuring that the results actually reach communities, and that's why the revised NHMRC Joint Consumer Statement matters. It gives all of us, consumers, consumer organisations, researchers, policymakers, a shared guide of how to work together. This isn't just about good intentions. It's a chance to change how we do things together. Because if you want research that changes lives, it has to be grounded in real life and lived experience.

02:02 Dr Elizabeth Deveny  
We look forward to working with our NHMRC colleagues and with the researchers around the country to bring this statement to life, not just as words, but as a way of working that puts people at the centre you.

End of transcript.

Adjunct Professor Darryl O’Donnell

Listen to Darryl O'Donnell, Adjunct Professor at UNSW, talk about how consumer and community involvement in research can lead to breakthroughs.

Video transcript - Adjunct Professor Darryl O’Donnell

00:00 Adjunct Professor Darryl O’Donnell 
What if we could cure HIV? Here in Australia, we have some of the world's best researchers working on this very challenge. Turning this possibility into reality demands collaboration, researchers, government and communities that are mobilised in the fight against HIV, all working together, because at its core, research is about people, and when people get involved, we move faster towards breakthroughs, driving better health outcomes for everyone. 

00:26 Adjunct Professor Darryl O’Donnell 
HIV emerged dramatically, and we didn't know how to treat or cure it. Today, we've made advances on so many fronts in HIV. We don't yet have a cure, but we do know how it's transmitted. We do know how to prevent it. We've got effective treatments that keep people alive and well.

00:43 Adjunct Professor Darryl O’Donnell  
Consumers and communities should always be at the centre of research. All of us have a stake in health research at different points in our lives, we'll all benefit from advances in medicine, in technology, sometimes those advances can even save a life. 

00:57 Adjunct Professor Darryl O’Donnell 
The Consumer Statement sets out standards and expectations for how researchers and communities will work together to produce excellence in research. The revision of the Consumer Statement is important for all of us, because it's going to set new approaches for the ways in which consumers and communities and researchers are working together to advance health. 

01:19 Adjunct Professor Darryl O’Donnell 
No one has a greater stake in those advances in health research, in science and in technology than people who have HIV and in their families and in their communities and in their communities.

End of transcript.

Ms Merryn Carter

Merryn Carter, health consumer advocate, talks about the importance of early detection and treatment of breast cancer.

Video transcript - Ms Merryn Carter

00:00 Ms Merryn Carter 
One in seven women and one in 550 men will be diagnosed with breast cancer during their lifetime. 

00:09 Ms Merryn Carter 
On average, nine Australians lose their lives to breast cancer every day. 

00:17 Ms Merryn Carter 
While a cure hasn't yet been found, early detection and treatment can be the difference between death and survival. I'm very fortunate that the drug trastuzumab was invented before my breast cancer diagnosis. It was invented to target the particular type of breast cancer that I had, and that's largely why I'm still here today, 15 years later. 

00:42 Ms Merryn Carter  
I volunteer with the Walter analyzer Hall Institute breast cancer lab, working with the professors there, providing the consumer perspective. Involving consumers in research provides insights that can help plot the path towards a cure. Tailoring their role to fit specific projects helps research remain relevant and focused on achieving the best outcomes. The NHMRC, CHF Consumer Statement has been designed to describe the roles of researchers and consumers. 

01:19 Ms Merryn Carter 
It's really important that consumers around Australia have their say about how the Statement is developed and finalised.

Professor Sean Taylor

Professor Sean Taylor, Director of Onemda: Aboriginal and Torres Strait Islander Health and Wellbeing, talks about how as a researcher, he involves communities and consumers.

Video transcript - Professor Sean Taylor

00:12 Professor Sean Taylor  
Every 30 seconds, someone in the world loses a limb because of diabetes, and it's happening right here in Australia. Over 1.5 million Australians live with diabetes, including concerning numbers of Aboriginal and Torres Strait Islander people. The search for better treatment and a cure is far from over. 

00:37 Professor Sean Taylor 
I saw diabetes at an early age how it affected many people in different rural and remote communities, and also within my own family, within Aboriginal Torres Strait Islander research in particular, my role is to engage with communities and consumers around how to inform research or the implementation of research. For example, I use Murray Island organisations, and I also use those who have lived experience with diabetes to help inform me how to implement the project in this community and what the consumers want me to look at, especially around cultural governance. 

01:14 Professor Sean Taylor  
Through yarning circles, through surveys, through one on one consultations, through adult health checks, and just talking and listening to our consumers to understand what their needs are, and that's what helped and shaped my overall research. As a member of the National Health and Medical Research Council Consumer and Community Advisory Group, we had the opportunity to review the Consumer Statement. One of the things that I really wanted to do was link the Consumer Statement to national documents that involve consumers at all levels. 

01:48 Professor Sean Taylor  
Engaging in those with lived experiences helps me, especially as a researcher, to identify how to better understand their issues, how to better understand what is the actual problem, especially within the health service, and how the health service can meet the needs of our patients.

End of transcript.

Dr Angela Jones

Listen to Dr Angela Jones, former Chief Operating Officer, Monash Partners, highlight why lived experience can play an important role in health and medical research.

Video transcript - Dr Angela Jones

00:00 Dr Angela Jones 
Imagine if exposure to one bug can mean you're in serious trouble and hospitalised. 

00:05 Dr Angela Jones 
This is a daily risk for people with cystic fibrosis, even with the best health care and self management, the disease is highly unpredictable, impacting patients and their families. 

00:16 Dr Angela Jones 
Chronic health conditions like cystic fibrosis are managed by people every day as the search for a cure continues. Insights into the lived experience of people managing chronic conditions can strengthen research, because research is about improving the health of our community. 

00:37 Dr Angela Jones  
Cystic fibrosis is a complex inherited condition that affects the lungs and the digestive system. Research holds the key to improving the health of people living with this condition. The development of drugs such as CF modulators has occurred over many, many years of research involving consumers and community members with cystic fibrosis in the process. 

00:59 Dr Angela Jones 
Since 2017 Monash partners has partnered with the 65 kilometre for cystic fibrosis community - a dedicated group of volunteers. We support them in identifying priorities, co designing granting and expression of interest, processes and peer review to ensure that they have consumer and community involvement at every stage. 

01:22 Dr Angela Jones 
The consumer and community involvement statement provides an important overarching framework to support genuine and meaningful consumer and community involvement in health and medical research. Much has changed since the last statement was developed in 2016 and this is a really important opportunity to come back together, revisit the statement and ensure that it's fit for purpose as we move forward.

End of transcript.