Long Covid Consumer Advisory Group

About the Project and the Involvement Opportunity

Researchers from Murdoch and Curtin University are working to better understand Long Covid, including why some people experience ongoing symptoms and how this condition impacts long term health. Their research focuses on identifying biological markers, improving diagnosis, and supporting better care and recovery.

Long Covid affects many people in different ways, often involving fatigue, brain fog, and other ongoing symptoms that can significantly impact daily life. However, it is still not well understood, and many people face challenges accessing diagnosis, treatment, and support.

Consumer involvement is essential to ensure this research reflects the real experiences of people living with Long Covid. This Consumer Advisory Group will provide ongoing opportunities for people with lived experience to guide research priorities, design, and outcomes, ensuring the work remains relevant and impactful.

About the Position

As a member of the Long Covid Consumer Advisory Group, you will work with researchers to provide input into the design and direction of Long Covid research. Your lived experience will help ensure the research addresses real-world challenges, improves understanding of Long Covid, and leads to practical outcomes for people affected.

You will contribute your perspectives on research ideas, build understanding of the lived experience, communication of findings, and future research priorities.

What Am I Expected to Do?

Attend regular meetings with the research team (quarterly)
Review documents (e.g., grant applications, consent forms/ participant information)
Share your lived experience and insights
Provide feedback on how research findings should be communicated in accessible ways

What Skills or Experience Do I Need?

We welcome people with lived experience of Long Covid, either as a patient or carer. You do not need previous research experience.

We are looking for people who:

Are comfortable sharing their experiences and perspectives
Can contribute to discussions in a respectful group setting
Are interested in improving research and care for Long Covid
Can attend online meetings, with basic familiarity with Zoom or Teams helpful

We value diverse experiences, backgrounds, and perspectives including that from rural consumers.

How Long Am I Expected to Be Involved?

We anticipate approximately 2 hours every 3-4 months for meetings, with occasional emails between meetings.

The group is expected to run for approximately 2 years, with involvement being flexible, as we understand that health needs may vary.

Where Will Meetings Be Held?

Online via Zoom/ Team

What Support Is Offered?

An honorarium of $50.00 per hour is available for consumer involvement activities in line with CCIProgram guidelines
Training and support provided by the CCIProgram or relevant support body.

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