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Improving detection and prevention of aortic stenosis

About the project and the involvement opportunity
The build-up of calcium on the aortic valve, which is located at the outflow of the heart, progressively blocks the blood flow to the organs and can cause debilitating symptoms and very poor survival. It is the third most common heart disease, and the number of people affected is increasing in Australia. Timely replacement of the valve can be lifesaving but comes with significant risks and at high cost. Until now there have been no preventative treatments. Our research aims to improve detection, better understand the contributing factors, and test new preventative therapies.

About the position
We would like to engage people with lived experience of aortic stenosis, or people who have cared for people with this condition, to help our research team to ensure that our research studies are relevant to and designed with consumers in mind, to advise on consumer relevant matters and to be advocates for the research program.

What am I expected to do?

  • Attend meetings no more than twice per year.
  • Provide feedback to on what aspects you feel are important to research
  • Provide feedback from a consumer perspective on proposed research projects
  • Help to translate our description of the research into every-day language
  • Help to generate ideas on how we can best advocate for research on aortic stenosis
  • Help to trouble shoot any consumer relevant challenges that may come up during the research
  • Assist in implementation practice by advising on how to increase public awareness and involve patients in shared decision making.

What skills or experience do I need?
Lived experience either of having milder forms or aortic stenosis (and therefore being at risk of requiring valve replacement surgery in the future) or having gone through surgical valve replacement for aortic stenosis. Also, those who have cared for, or are caring for people with this condition are invited to apply. An open mind and willingness to engage constructively with the research team. Any non-medical skills that can help to improve the consumer relevance of our research or to communicate, network or advocate for this research. A little bit of extra time, energy and a desire to make a difference for those who may be diagnosed with this condition in the future.

How long am I expected to be involved?
2-3 years.

Where will meetings be held?
Most likely at the Royal Perth Hospital site. Meetings could also be virtual.

What support is offered?
$37.50 per hour honorarium. Training and support is offered by the Consumer and Community Involvement Program.

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