RESEARCH - GET INVOLVED

Research & You – Shaping the Future of Immunisation

Your Lived Experience is the Missing Piece of the Puzzle

Why your voice matters in medical research.

At the Immunisation Foundation of Australia, we believe that vaccines are for everyone  - and therefore, research into infectious diseases should include everyone.

Medical research isn’t just about lab coats and microscopes; it’s about people. Your "lived experience" - whether you are a parent, a carer, or someone who has been affected by an infectious disease - provides insights that even the most experienced scientists might miss.

What is Consumer & Community Involvement (CCI)?

Consumer involvement means research is conducted with or by members of the public, rather than to, about, or for them.

When community members join a research team, they help ensure that:

  • Research questions focus on what actually matters to families 

  • Study materials, like consent forms, are easy to understand and respectful.

  • Clinical trials are designed to be practical for busy people to attend.

Ways You Can Get Involved

There are many levels of involvement, ranging from one-off feedback to long-term partnerships:

Featured
Role: Advisor
Role: Advisor

What you’ll do: Join a Community Reference Group to provide feedback on specific projects.

Role: Reviewer
Role: Reviewer

What you’ll do: Read through participant information sheets to ensure the language is clear and jargon-free.

Role: Priority Setter
Role: Priority Setter

What you’ll do: Help researchers decide which diseases or health issues should be studied first.

Role: Co-Investigator
Role: Co-Investigator

What you’ll do: Work as a formal member of a research team to help guide the study from start to finish.

Frequently Asked Questions

  • Guidelines and research only meet the needs of the community if they are developed with meaningful engagement from people with lived experience. Your insights ensure that research focuses on outcomes that actually matter to families.

  • No. Your expertise comes from your lived experience of a health condition or your journey through the healthcare system. While some projects offer technical training to help you understand the "basic science," your primary role is to provide a non-scientific community perspective.

  • Roles vary based on the project. You might join a committee to help set research priorities, review documents to ensure they are readable, or help researchers understand the values and preferences of patients.

  • Your involvement is a professional contribution that should be valued. While specific arrangements vary by project, you should generally expect:

    • Honorariums: Most research organisations offer "sitting fees" or payments to recognise the time you spend in meetings or reviewing materials.

    • Reimbursements: Research budgets should cover out-of-pocket expenses such as travel, parking, meals, and carer or childcare support.

    • Transparency: You should be informed of the payment rates and claim processes before you agree to participate.

  • It depends on the role. Some opportunities are one-off (like a focus group), while others are ongoing (like a committee role). The expected time commitment and meeting schedule should be clearly explained to you upfront.

Ready to make an impact?

Join our Consumer Register to be notified of upcoming opportunities at institutes like the Telethon Kids Institute and NCIRS.

Download our "Getting Started" Guide