Role
The Consumer Reference Panel (CRP) strengthened consumer involvement in the implementation of the Medical Research Future Fund (MRFF). This helped us to:
- fund research that has the best opportunity for improving the health and wellbeing of individuals and their families and carers
- improve consumer confidence in and engagement with the MRFF, by providing consumers a more formal and clear communication channel into the MRFF.
Terms of reference
View the CRP's terms of reference.
Members
We approached a range of organisations to seek member nominations for the CRP. We selected members based on their:
- skills, expertise and experience
- existing and/or previous involvement in health and medical research
- ability to represent the views of a balanced cross section of the community.
The CRP ceased on 30 June 2024. The following information was current until the CRP ceased.
The interim NHMRC-MRFF Consumer Advisory Network currently provides advice on strategies for strengthening consumer involvement. It includes former CRP members.
| Member | Background and experience | Declarations of Interest |
|---|---|---|
| Mr John Stubbs AM (Chair) | John is a board member of the Cancer institute NSW. John is a survivor of Leukaemia and a strong advocate for people with cancer and chronic disease. John is the Australian Consumer Representative on the International Colon Cancer Familial Register funded through the National Institute of Health in the United States. John has contributed to more than 40 research papers and has previous involvement in MRFF, NHMRC and Cancer Australia grant assessment processes. | Nil |
| Ms Dania Ahwang (Deputy Chair) | Dania is the CEO of Wuchopperen Health Service, a community controlled Aboriginal and Torres Strait Islander Health Organisation in Cairns. Dania has MRFF grant assessment committee experience. | Nil |
| Mr Mohammad Al-Khafaji | Mohammad is the Head of Strategic Partnerships at SBS, and the former CEO of the Federation of Ethnic Communities' Councils of Australia (FECCA). Mohammad is passionate about health equity for culturally, ethnically, and linguistically diverse Australians. He is a member of the Health Performance Council of South Australia . | Nil (SBS) FECCA provides support/advice to projects in receipt of MRFF grant funding |
| Mr Karl Briscoe | Karl is the CEO of the National Association of Aboriginal and Torres Strait Islander Health Workers and Practitioners (NAATSIHWP). Karl has worked for over 20 years in the health sector at various levels of government. He brings strong experience in supporting the effective involvement of Aboriginal and/or Torres Strait people in research projects. | Nil |
| Ms Merryn Carter | Merryn is a consumer advocate with the Walter and Eliza Hall Institute’s Breast Cancer Laboratory. Merryn is a member of Breast Cancer Trials Australia New Zealand’s Consumer Advisory Panel. | Nil |
| Ms Nyree Gale | Nyree is the Lived Experience Resource Network Manager at the Black Dog Institute. Nyree has worked across research and clinical work for over a decade. Nyree is a strong advocate for people with lived experience of mental health challenges and/or suicide. Nyree also has her own lived experience with mental health challenges and suicide related experiences. | Nil |
| Mrs Kate Griggs | Kate is a health consumer representative in the policy areas of patient safety national regulation, medical education and medical research. Kate has been a consumer representative on both MRFF and NHMRC grant assessment committees. | Board member: Paramedicine Board of Australia, Tasmanian Medical Board |
| Mr Ben Horgan | Ben is Community Development Officer for the East Metro Health Service within the Royal Perth Bentley Group. In this role Ben works to improve collaboration between clinicians, researchers, service providers and health consumers within the local community. | Nil |
| Ms Bonnie Ikeda | Bonnie is a consumer investigator in a current MRFF grant and has strong advocacy expertise for consumer engagement in research. Bonnie draws on her lived experience as a health consumer and carer for family who identify with a culturally diverse background. | Consumer advisor to an MRFF funded project. |
| Ms Anne McKenzie AM | Anne is a Consultant and Consumer Advocate at Telethon Kids Institute. Anne holds an Adjunct Appointment at the School of Population and Global Health at the University of Western Australia. Anne is a member of Health Consumers Council WA and Consumers Health Forum and serves as a consumer member on key research committees. | Short term consultant to the Commonwealth Department of Health. Consumer committee member: Australian Teletrial Program, Clinician and Consumer Advisory Group. Genomics Australia, Involve Working Group. National Prescribing Service, Data Governance Committee. Australian Commission on Safety and Quality in Healthcare, Health and Medical Research Advisory Group. Australian Commission on Safety and Quality in Healthcare, Ethics Committee Advisory Group. National Health and Medical Research Council, Targeted Call for Research Prioritisation Committee. Board Director: Australian Clinical Trials Alliance. MRFF grant funding recipient. |
| Mrs Karen Van Gorp | Karen is a stage IV melanoma survivor. Karen chairs the Melanoma Patients Australia (MPA) Consumer Advisory Group, is a board director for MPA and provides peer to peer support. Karen chairs Cancer Voices SA Executive, sits on the SA Cancer Plan Board and is involved in the development of the Australian Cancer Plan. Karen is a mother of 3 and a senior policy officer at Business SA. Karen is a member of the Consumers Health Forum and a consumer representative on various committees. Karen has been a consumer representative on Cancer Australia grants assessment and an associate investigator on research grant applications. | Nil |
| Mrs Robina Yasmin | Robina is currently a member for the Multicultural Disability Advocacy Association of NSW and a member of the Planet Puberty Stakeholder Advisory Committee of Family Planning Australia. She is also a trained peer mentor for the Diversity and Disability Alliance. Robina is an anthropologist with many years’ experience working in public health programs. Robina is also the mother of 6 children. She has extensive experience accessing services and support for her son with cerebral palsy. | Nil |
Principles for consumer involvement in MRFF funded research
In March 2023, the CRP delivered the principles for consumer involvement in research funded by the Medical Research Future Fund.
The principles outline the best practice for consumer involvement in MRFF-funded health and medical research. Effective consumer involvement is an important strategy to build MRFF funded research:
- quality
- outcomes
- relevance
- impact
- international competitiveness.
Principles for consumer involvement in research funded by the Medical Research Future Fund
Related committees and groups
The CRP:
- reported to the CEO of the Health and Medical Research Office (HMRO)
- received secretariat support from the HMRO.
Contact
