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Consumer Advisory Panel

About the Panel

The NCARD Consumer Advisory Panel (CAP) brings together people with lived experience of asbestos-related disease to help inform NCARD’s research. Our panel includes people affected by mesothelioma and other asbestos-related diseases, carers, advocates, and community representatives.

The Panel provides an important consumer and community perspective on NCARD’s research activities. Its members help ensure our work is relevant, respectful, and informed by the experiences and priorities of people affected by asbestos-related diseases.

The Panel also serves as the consumer advisory group for NCARD’s Asbestos Review Program (ARP), helping to provide consumer input relevant to this long-running research and surveillance program.

Consumer involvement is an important part of how NCARD works. We are grateful to our CAP members for the time, insight and expertise they contribute.

Melvin Chin speaking at NCARD Public Lecture

Why consumer involvement matters

At NCARD, we believe research is stronger when it is informed by the people it is intended to help.

Consumer input helps us to:

  • focus on issues that matter to patients, families and carers
  • improve the design and conduct of research
  • make participant information clearer and easier to understand
  • consider the practical realities of taking part in research
  • support research translation and communication in ways that are meaningful to the community
Prof Jenette Creaney speaking with consumers and advocates at the 2021 NCARD Public Lecture

Prof Jenette Creaney speaking with consumers and advocates at the 2021 NCARD Public Lecture, including the late Robert Vojakovic, ADSA founder and former NCARD Consumer Advisory Panel member.

What the Panel does

The Consumer Advisory Panel provides NCARD’s research teams with a consumer perspective on planned and ongoing research. This includes:

  • considering the relevance of new research ideas from a consumer perspective
  • advising on feasibility, safety, logistics and participant burden in research studies
  • reviewing the clarity and accessibility of participant-facing information and other written materials
  • identifying gaps in research and emerging questions important to people affected by asbestos-related disease
  • providing feedback on communication, consent and participant experience
  • contributing to discussion about research priorities and the translation of research outcomes
Group photo of attendees at the NCARD Consumer Advisory Panel meeting, seated around a conference table and smiling towards the camera.

Consumer Advisory Panel

We are grateful to the members of the NCARD Consumer Advisory Panel (CAP), who contribute to our research planning, conduct and implementation.

Carole Kagi

CAROLE KAGI

PANEL MEMBER

Carole has a background in social work, aged care, and remote and rural health. Her parents moved to Wittenoom when she was a child, and her father later died of mesothelioma. Carole has been involved with the Asbestos Review Program for many years and has also contributed to the Sir Charles Gairdner Hospital Community Advisory Council and Human Research Ethics Committee. She brings extensive experience in consumer and community involvement, together with a longstanding personal connection to asbestos-related disease.

Corrine Naisbitt

CORRINE NAISBITT

PANEL MEMBER

Corrine cared for her husband Richard during his illness with mesothelioma until his death in 2019. Through this experience, she developed a strong interest in advocacy, fundraising and raising awareness to support people affected by mesothelioma and their families. Corrine brings the perspective of a carer and advocate, as well as a deep commitment to improving outcomes for others facing this disease.

LIZZ CLARKE

PANEL MEMBER

Lizz is a registered nurse with more than 20 years of experience across acute and community health settings. She was the primary carer for her husband, Colin, following his diagnosis of mesothelioma, until his death in 2020. Lizz has also worked in the not-for-profit sector supporting people affected by asbestos-related disease. She brings both professional and lived experience, with a strong understanding of the needs of patients, families and carers.

MERRYL BERRY

PANEL MEMBER

Merryl is a retired primary school teacher from Queensland who was diagnosed with mesothelioma in 2022. She is active in her local community and brings lived experience of diagnosis, treatment and ongoing care. Merryl is passionate about contributing to research that may improve outcomes for others affected by mesothelioma, now and in the future.

Melita Markey

MELITA MARKEY

PANEL MEMBER

Melita is Chief Executive Officer of the Asbestos Diseases Society of Australia (ADSA). She is a strong advocate for people affected by asbestos-related disease and is committed to improving awareness, support, compensation pathways and research investment. Through her leadership role and community engagement, Melita brings broad insight into the needs of patients, families and the wider asbestos-affected community.

Katey Ashburner

KATEY ASHBURNER

PANEL MEMBER

Katey is a nurse with more than 25 years of experience across haematology, medical oncology, radiation oncology and palliative care. In her role with Mesothelioma and Dust Diseases Australia, she provides support to individuals and families impacted by mesothelioma. Katey brings extensive clinical experience together with a strong understanding of the care and support needs of people living with asbestos-related disease.

Mackenzie-Lighton_square

MACKENZIE LIGHTON

PANEL MEMBER

Mackenzie cared for her mother through mesothelioma while completing her undergraduate studies. Her family’s experience of asbestos-related disease, including multiple losses across generations, has shaped her commitment to advocacy and research. Mackenzie has also contributed to fundraising and awareness activities and is now undertaking research training at NCARD. She brings both lived experience and scientific understanding to her role on the Panel.

Learn more

NCARD is committed to meaningful consumer involvement across its research activities. The Consumer Advisory Panel is one of the ways we work in partnership with people affected by asbestos-related disease to help shape research that is relevant, practical and grounded in lived experience.

  • To learn more about NCARD’s research, visit our Research pages.
  • If you are looking for support, advocacy organisations or practical resources, visit our Patient Resources page.
  • To have your say, learn more about Asbestos Voices, NCARD’s survey initiative that invites people affected by asbestos-related disease, as well as those with relevant lived experience, to help inform research priorities.
  • For general enquiries, please contact us.