Offering vital support and connection to underserved patients

Each year in Australia, around 1,900 people are diagnosed with a brain tumour according to the Cancer Council. This diagnosis starts an unfamiliar and frightening journey, often characterised by inadequate information, treatment and support.

A new digital platform, Brain Tumours Online, aims to make this journey a little easier. It has been developed by a committed team of healthcare professionals, researchers, website developers, as well as brain tumour patients and their carers, and it provides reliable information, self-care tools and a supportive community.

The initiative has been entirely designed around the voices of patients and carers who have shared their experiences and valuable insights as to where information and support are desperately lacking following a brain cancer diagnosis.

“The team includes neurosurgeons, medical oncologists, cancer care coordinators who help patients navigate the health system and, importantly, people with lived experience of a brain tumour,” says Sarah Bray, Brain Tumours Online Project Manager.

Dr Sarah Bray.

Co-designed with patients and carers, the platform has three main sections: a Learn pillar where people can find evidence-based, curated and reliable information about brain tumours, a Connect pillar with an online support group moderated by researchers and clinicians, and a Toolbox pillar with evidence-based online tools and programs that people can work through at home to manage symptoms and challenges.

“Patients and carers told us that when there is a diagnosis, they go to Dr Google to find information but it’s overwhelming and hard to understand what is trustworthy. We want to signpost information that is current and accurate and provide ways to easily filter it so that people can find the right information at the right time,” says Dr Bray.

“People also said it can be hard to attend face-to-face support groups because the tumour or their medication might mean they can’t drive. Also, there are different kinds of brain tumours and it can be hard to find people going through similar experiences at similar life stages.

“So, we have created an online support group so people can connect with others across the country and share similar experiences. It is a safe space for people to connect.”

“We have known there are gaping holes in our supportive care of brain tumour patients for a long time, but it is important that the solutions to these problems are evidence-based and patient- and carer-centred,” says Professor Kate Drummond, Director of Neurosurgery at the Royal Melbourne Hospital.

“Brain Tumours Online is the culmination of 10 years of research and brainstorming and we are very excited that it has now moved into the evaluation phase. We hope we can make a real difference to this most vulnerable group of patients.”

The development of the website has been funded through a Medical Research Future Fund Brain Cancer Survivorship Grant and brings together expertise from the University of Melbourne, Royal Melbourne Hospital, Peter MacCallum Cancer Centre, Barwon Health, St Vincent’s Hospital in Melbourne and digital design industry partner, Two Bulls/DEPT.

Brain Tumours Online is now in the evaluation phase and is recruiting 300 patients, 200 carers and 30 healthcare professionals to use the website and provide feedback on what works and where there is room for improvement. The evaluation period will be completed in mid 2024. Feedback will be analysed and actioned ready for Brain Tumours Online to go live in Australia and internationally, where there has already been lots of interesting to participate.

“I’m very excited about the potential of Brain Tumours Online to make a real difference for our patients,” says Professor Drummond.

“The evaluation will be rigorous and unique to this type of platform, aiming to maximise the benefit and reach.”