Toolkit
Research & Advisory
Bringing the brain cancer community's voice into research and decision-making
Peace of Mind Foundation is committed to ensuring that the voices and experiences of people affected by brain cancer are represented in the research, programs, policies and decisions that have the potential to shape their care and quality of life.
Through our involvement in national and international advisory groups, research collaborations and consumer committees, we contribute the perspectives of patients, carers and families to discussions across brain cancer research, clinical trials, supportive care, treatment access, psychosocial support, patient-reported outcomes and health service development.
Our involvement is informed not only by lived experience…
But by the thousands of patients and families Peace of Mind Foundation has supported across Australia.
This provides our team with a unique understanding of the practical challenges, unmet needs and priorities experienced by people throughout the brain cancer journey.
We also collaborate with researchers and clinicians on research projects and have contributed as co-authors to a number of research papers and publications.
Our Advisory & Research Involvement
Peace of Mind Foundation contributes to a range of national and international committees and advisory groups, including:
➤ International IDHm Diffuse Glioma Patient Committee – Servier
Providing patient and carer perspectives to international discussions relating to IDH-mutant diffuse glioma.
➤ Global Oncology Patient Advisory Committee – Servier
Contributing lived-experience perspectives to global oncology discussions and initiatives.
➤ BrainPOP Consumer Group – The Brain Cancer Centre (WEHI)
Consumer involvement in the Brain Peri-Operative Platform (BrainPOP), supporting the development of peri-operative brain cancer research and trials.
➤ Brain Tumours Online National Stakeholder Group – The Royal Melbourne Hospital & University of Melbourne
Contributing to the development and ongoing direction of national online information and support for people affected by brain tumours.
➤ BRAINS Program Stakeholder Committee – Psycho-oncology Co-operative Research Group (PoCoG)
Providing stakeholder and lived-experience input into research focused on the psychosocial and supportive care needs of people affected by brain cancer.
➤ Australian Brain Tumour Collaborative (ABTC) Steering Committee
Contributing to national collaboration and discussion across the Australian brain tumour research, clinical and support community.
➤ COGNO Consumer Advisory Panel – Cooperative Trials Group for Neuro-Oncology
Providing consumer perspectives to support neuro-oncology clinical trials and research.
➤ Paediatric Low Grade Glioma Market Access Advisory Board – Ipsen
Contributing patient, family and advocacy perspectives to discussions relating to paediatric low grade glioma and access to emerging treatment options.
➤ Lived Experience and Priority Populations Advisory Group – Cancer Council Navigation Project (LEAP)
Contributing lived-experience perspectives to the development of cancer navigation approaches, including consideration of the needs of priority populations.
➤ ACNNP – Consumer Advisory Group
The Australian Cancer Nursing and Navigation Program (ACNNP) Consumer Advisory Group helps ensure cancer nursing, navigation and support services are shaped by the lived experiences of patients, carers and families. As a previous brain cancer carer and further experience within my role at Peace of Mind Foundation, I bring both personal experience and insights from supporting patients and carers nationally, helping inform equitable, practical and consumer-centred care.
➤ Cancer Council – NGO & Sector Partnerships Advisory Group
The Cancer Connect NGO & Sector Partnerships Advisory Group helps guide the development of a nationally connected cancer navigation service through collaboration with specialist cancer organisations. Within my role at Peace of Mind Foundation, I contribute expertise in service design, referral pathway development, data collection and reporting, process improvement, partnership building and outcome measurement. Combined with insights from supporting brain cancer patients, carers and families across Australia, I can help identify service gaps, strengthen sector integration and ensure support services remain practical, evidence-informed and responsive to consumer needs.
➤ Glioma Advisory Council – Servier
The Glioma Advisory Council provides a forum for understanding the lived experience of IDH mutant diffuse glioma to help drive tailored resources and supports for the people impacted.
Participate in Research
The involvement of patients, carers, bereaved family members and clinicians is critical to improving our understanding of brain cancer and developing better treatments, services and supports.
Peace of Mind Foundation regularly works with universities, hospitals, research institutes, clinical trial groups and other organisations seeking members of the brain cancer community to participate in research and advisory activities.
Opportunities may include:
• brain cancer and quality of life research
• patient-reported outcome studies
• clinical and supportive care research
• consumer and lived-experience advisory groups
• surveys, interviews and focus groups
• research priority-setting activities
• education and training initiatives
• clinician and health professional research
• treatment and clinical trial research; and
• opportunities to help researchers design, review and communicate their research.
Current opportunities will be shared on this page as they become available.
For Researchers & Organisations
We welcome approaches from researchers, universities, hospitals, clinical groups and organisations seeking meaningful engagement with the brain cancer community.
Peace of Mind Foundation may be able to assist with:
• consumer and lived-experience input into research design
• identifying priorities and unmet needs within the brain cancer community
• reviewing patient-facing information and resources
• consumer representation on research or advisory committees
• recruitment and promotion of appropriate research opportunities to our communit
• connecting researchers with patients, carers or clinicians for eligible studies
• education and training relating to the lived experience and complexities of brain cancer; and
• collaboration on research publications and knowledge translation.
We believe research is stronger when the people it is ultimately intended to benefit are involved in shaping it.
Interested in working with us or participating in research?
Contact Peace of Mind Foundation to discuss current opportunities or potential collaborations.