“Living With High Lp(a)? Join Our Research Study”

Researchers from The Nutrition and Health Innovation Research Institute (NHIRI) is inviting people with firsthand experience of high Lipoprotein(a) [Lp(a)] to express their interest in participating in research.”

About the project

Lp(a) is a cholesterol-rich lipoprotein that is high in ~20% of people, yet only ~1-2% have been tested. Being inherited, means that people with high-Lp(a) have inherited it from one or both parents (i.e., they are born with it). Having high Lp(a) levels increases the risk of cardiovascular disease.

The aim of this research is to:

1. Determine how we can improve the health and management of individuals and their families living with high Lp(a), and
2. Improve the awareness of Lp(a) among health professionals and the community so those living with high Lp(a) can be detected earlier.

The researchers expect this will lead to improved strategies to lower cardiovascular risk (easier and earlier access to screening, and the development of evidence-based resources, dietary and lifestyle support) for people with high Lp(a) levels, so they can live longer, healthier lives.

Consumer involvement is important to ensure that this research is focused on the areas that matter most, for the people it impacts the most. Your lived experience will help us to better understand the experiences and the perspectives from someone with high Lp(a) in either yourself (and/or your family member). Your input will also help identify and guide targeted solutions to improve management for other people and/or their families.  

About the position

• Initially, share your (or a family member’s) lived experience with high Lp(a) over an informal coffee /tea meeting (approximately 1–1 ½ hours). This initial meeting is an opportunity to get to know each other and for us both to ask questions about whether and how you might like to be involved. The researcher may ask about your experiences of living with Lp(a) (in yourself or your family member), about how you were screened, by whom, any treatments offered, challenges, etc. The researcher may also ask about what things you feel could be improved and how research might help. There are no right or wrong answers, and this is purely for us to get to know each other. There is no obligation to continue with any further involvement if you choose not to after this initial meeting.
• 2-3 Research Buddies will be selected who we hope will continue to provide ongoing lived experience for this research.

Continued involvement (after this initial meeting) may include any of the following:

• Working closely with the research team to provide insights from lived experience.
• Participating in meetings (or workshops) to provide ongoing input on the study (online or in-person).
• Provide feedback on study materials, resources, and documents.
• Help ensure research is relevant and accessible to the community.
• Work alongside researchers in designing, recruiting, conducting, and/or disseminating the research findings.

What Am I Expected to Do?

• Share lived experience to help ensure the research matches the needs and priorities of consumers.
• Participate in meetings or workshops to provide ongoing input by sharing your lived experience perspective.
• Provide feedback on study materials, resources, and documents.
• Assist with recruitment strategies and communication of research findings.

What Skills or Experience Do I Need?

• Lived experience of having high Lp(a) levels (or as a family member/carer).
• Willingness to engage in discussions and provide feedback.
• Ability to review documents and make suggestions.
• Interest in research and a desire to contribute to positive change.
• Interest in health (especially nutrition and lifestyle) an advantage, although not essential.
• No prior experience in research or consumer involvement is necessary.

How Long Am I Expected to Be Involved?

You have the option to be involved for as little or as long as you prefer.

• Initial one-time coffee meeting,
• Occasional, or one-time consultation (e.g., reviewing a document), or
• Short-term involvement (e.g., 3-6 months, attending periodic meetings).  
• If the project becomes funded, then you will have the opportunity to have ongoing involvement for the project duration (~2-3 years⁺).

The research team is keen to have your ongoing involvement over the whole duration, if possible, although short-term involvement is highly valued.

Where Will Meetings Be Held?

• Initial meeting at a location that is convenient to you
• Hybrid (a mix of in-person meetings and online, based on your preference).

What Support Is Offered?

• An honorarium of $50.00 per hour to acknowledge your contribution/s.
• Training and support available through the Consumer and Community Involvement Program.

How to Apply

Closing date for expressions of interest: Friday 13^th February 2026.

Please contact Dr Caroline Hill: caroline.hill@ecu.edu.au