What is Brain Tumours Online?
Brain Tumours Online is an Australian supportive care platform for adults with brain tumours, their carers, and health care professionals. It provides access to evidence-based resources, digital health tools, an engaging webinar program, and an online space for people to connect and share experiences for people with primary brain tumours and brain metastases (cancer that has spread from another part of the body to the brain).
Who we are looking for?
We are looking for adults who want to volunteer to help contribute to the Brain Tumours Online research projects and the continued improvement of the Brain Tumours Online website, and who have:
- lived experience of a primary brain tumour, or
- lived experience of brain metastases, or
- cared for a loved one with a brain tumour or brain metastases.
What do we mean by ‘Consumer’?
In research, when we use the term ‘consumer’ or ‘consumer representative’, we mean people who have lived experience in a particular disease or health area, or people who care for someone who has a particular disease. Not everyone considers themselves a ‘consumer’, but this is the common term used in health research to mean someone with lived experience who is contributing to the research project. You may also hear the words ‘lived experience expert’, ‘patient advocate’, ‘patient’, ‘carer’, ‘community advocate’ or a range of other terms.
Our approach to consumer involvement:
We recognise the vital importance of lived experience perspectives in shaping research. We also acknowledge that living with a brain tumour or caring for someone with a brain tumour, has significant life impacts. Your interest and capacity to contribute to research may change over time. To avoid over-burdening any one individual, we are building a network (or pool) of consumers and community members to support Brain Tumours Online activities.
What you could be invited to be involved in:
Members of the Consumer & Community Advisory Pool (CCAP) may be invited to participate in a wide range of activities as opportunities come up. Activities vary and we will explain the time and requirements before you decide to take part. Examples include:
- Attending workshops or online meetings (Zoom)
- Completing online surveys
- Serving as a lived‑experience representative on a committee
- Reviewing documents (e.g. grant applications) or content for the website
- Being a peer champion in our social media community
- Speaking on a webinar panel or in interviews or in a video to share your lived experience perspective
- Taking part in relevant research studies
Practical details:
- Participation is voluntary — you can accept or decline any invitation to participate in an activity.
- Most activities require internet access and your own device (computer, tablet or smartphone), e.g. to attend online meetings via Zoom, respond to emails etc.
- Where budget available and appropriate for the activity, we offer remuneration (digital gift cards) as a token of our appreciation of your time, in line with the VCCC Alliance cost model. Not all activities have remuneration, but if it is available for a specific activity, we will state this up front when we send out the activity invitation.
What we offer:
- Input into a valuable project to help others living with a brain tumour,
- Work with an enthusiastic team,
- Appropriate recognition of your contribution in project publications/presentations,
- And for some activities we can offer honorarium payments (digital gift cards) as a thank you for your volunteer contributions.
Want to join our Consumer & Community Advisory Pool?
If you would like to find out more, please complete the online ‘Expression of Interest’ form. Someone from the Brain Tumours Online team will contact you in the next few days to provide more information.
Scan the QR code to access the Expression of Interest form, or click on this direct link instead.
We look forward to hearing from you!