'Insights into the lived experience of people managing chronic conditions can strengthen research.'
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, and why you should have your say in the review of the Statement on Consumer and Community Involvement in Health and Medical Research (the Statement).
NHMRC and the Consumers Health Forum of Australia (CHF) are reviewing the Statement – have your say and get involved today.
- Video transcript
[An image appears of Dr Angela Jones talking to the camera above a small NHMRC logo, and then the image changes to show a doctor holding a clipboard talking to a patient, and text appears: Dr Angela Jones, Chief Operating Officer Monash Partners]
Dr Angela Jones: Imagine if exposure to one bug can mean you're in serious trouble and hospitalised.
[Music plays as images move through to show views of a patient monitor screen, various medical scans, support tubes, and then a female using a nebuliser]
This is a daily risk for people with cystic fibrosis.
[Image changes to show Angela talking to the camera, and then the image changes to show a hand using a stethoscope on a young male]
Even with the best healthcare and self-management, the disease is highly unpredictable, impacting patients and their families.
[Music plays as image morphs into the NHMRC logo on a blue screen, and then the image changes to show Angela talking to the camera]
Chronic health conditions like cystic fibrosis are managed by people every day.
[Images move through to show a close view of Angela talking, a female listening, and then a three way split screen of a hand pointing at a brochure, a female stretching and a researcher]
As the search for a cure continues, insights into the lived experience of people managing chronic conditions can strengthen research.
[Image changes to show an orderly on the left pushing a patient in a hospital bed as a female walks beside on the right, and then the image changes to show a crowded beach]
Because research is about improving the health of our community.
[Music plays as images move through to show a male using a skateboard, a monitor with a patient’s health analysis, a hand using a nebuliser, and then views of an x-ray]
Cystic fibrosis is a complex, inherited condition that affects the lungs and the digestive system.
[Images move through to show a split screen of a male holding up lab tests, and a male using a computer, and then a split screen of a female talking to a male, and colleagues walking together]
Research holds the key to improving the health of people living with this condition.
[Images move through to show a hand using a stethoscope on a young female’s back, medium and close views of Angela talking to the camera, and then a young female playing on play equipment]
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.
[Music plays as images move through to show a young male going down a slide, a female talking with a male, lab testing, a test tube, Angela talking, people running, and photos of volunteers]
Since 2017, Monash Partners has partnered with the 65 kilometre for Cystic Fibrosis Community, a dedicated group of volunteers.
[Images move through to show a split screen of more volunteer photos, a table of plastic water bottles, and then a medium and then close view of Angela talking to the camera]
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.
[Images move through to show views of a female typing on a laptop, scans displayed on a laptop screen, a researcher using lab equipment, and then the female talking as she holds lab tests]
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.
[Images move through to show a researcher using a microscope, views of Angela talking to the camera, views of a computer screen, and a split screen of fingers typing above a female’s face]
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.
[Music plays as images move through to show a researcher looking at an x-ray, an animation of various people spread across the screen, 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, and then the NHMRC logo on a blue screen]
Visit our website to find out how to participate in forums and you can also fill in our survey.
[Music plays]
End of transcript.
