'This isn’t just about good intentions, it’s a chance to change how we do things together. Because if we want research that changes lives, it has to be grounded in real life and lived experience.'
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) and why you should have your say in its review.
NHMRC and the CHF are reviewing the Statement - have your say and get involved today.
- Video transcript
[An image appears of Dr Elizabeth Deveny talking to the camera, and the images move through to show children running on play equipment, and then a doctor checking a baby, and text appears: Dr Elizabeth Deveny, CEO, Consumers Health Forum]
Dr Elizabeth Deveny: Imagine that you have a child and suddenly you discover they've got a very rare condition.
[Image changes to show a split screen of a doctor talking to a female holding a toddler, above a female with a child talking with a doctor and looking at information together]
Now you're talking to clinicians, it’s very technical.
[Image changes to show a medium view of Elizabeth talking to the camera]
You suddenly need a whole lot of information and a whole lot of skills you don't have. Where do you find them?
[image changes to show a close view of Elizabeth talking to the camera, and then the image changes to show a female looking down]
You find that in organisations like ours and many others who support communities at this time.
[Music plays as image changes to show a white screen with text: CHF Consumers Health Forum of Australia]
[Image changes to show Elizabeth talking to the camera, and then the image changes to show a blood pressure monitor on an arm]
CHF is a membership organisation. We’re the national peak body for health consumers.
[Image changes to show a female talking while holding her shoulder, and then the image changes to show a male and a female talking as they look at an iPad at a table]
We work with individual consumers as well as with community groups and national organisations.
[Image changes to show a close side profile view of Elizabeth talking]
We started in the 1980s during the HIV/AIDS crisis.
[Image changes to show Elizabeth talking to the camera, and then the image changes to show a split screen of a doctor talking to a young male above a masked doctor talking to a masked young male]
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.
[Images move through to show a doctor looking at x-rays, a male putting a pill into his mouth, an IV in a female’s arm, a male using a blood pressure monitor and then medical staff pushing a bed]
We advocate for safe, affordable healthcare that Australians can access when they need it and that the people using the system have a real say in how it works.
[Images move through to show a female using a laptop, a doctor talking with a patient, Elizabeth talking to the camera, a female talking into a smartphone, and then putting an EEG cap on a male]
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 for themselves in research environments.
[Music plays as images move through to show researchers on a lab, a female using a computer, two males interacting, colleagues working together, a male sitting, and then a female holding a toddler]
[Images move through to show Elizabeth talking to the camera, scan data research on a screen, and then a split screen of a doctors talking to a female patient above a doctor talking to a male patient]
Today we focus on making sure that health policies and research include the people most affected.
[Images move through to show views of an AI robot arm, and then a split screen of doctor talking to a female with children, a female with an elderly patient, and a doctor walking behind patients]
If research is publicly funded, it should reflect the diversity of the public voice.
[Images move through to show Elizabeth talking to the camera, a female looking through a microscope, manipulating a petri dish sample, and the camera pans left over colleagues laughing]
Consumers want to help shape the research questions and improve the research design, ensuring that the results actually reach communities.
[Image changes to show a close view of Elizabeth talking to the camera]
And that's why the revised NHMRC Joint Consumer Statement matters.
[Image changes to show a medium view of Elizabeth talking to the camera]
It gives all of us consumers, consumer organisations, researchers, policymakers, a shared guide of how to work together.
[Image changes to show hands placing sample tubes into a rack, a split screen of a researcher looking through a microscope above a doctor talking to a patient, and then trays of orange squares]
This isn't just about good intentions, it’s a chance to change how we do things together.
[Image changes to show ha hand using a pipette, a petri dish with a bacterial sample, and then a split screen of a female talking as a female takes notes above a doctor talking to a patient]
Because if you want research that changes lives, it has to be grounded in real life and lived experience.
[Images move through to show colleagues interacting, researchers working in a lab, a female using a laptop, colleagues in a meeting, a hand using a texter, and then Elizabeth talking to the camera]
We look forward to working with our NHMRC colleagues and with 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.
[Image changes to show an animation of various people spread out across the screen, and then the people assembling at the bottom of the screen]
Research can't happen without consumers and communities.
[Animation image shows blue circles rising from the assembled crowed and morphing into three stacked speech text boxes]
Have your say and get involved.
[Animation image shows a checklist clipboard appearing and the speech boxes merging onto the clipboard, and ticks appearing in boxes on the checklist]
Visit the website so you can find out how you can participate in forums and you can fill out the survey, too.
[Music plays as the image changes to show a white screen with the NHMRC logo on the left and the CHF Consumers Health Forum of Australia logo on the right]
End of transcript.
