Co-Designing a User-Centered Digital Health Tool for Supportive Care Needs of Patients With Brain Tumors and Their Caregivers

Over the last four years, led by Prof Kate Drummond (University of Melbourne and Royal Melbourne Hospital), and with support from an MRFF Brain Cancer Survivorship Grant, our multi-institutional team of healthcare professionals, digital health researchers, digital product developers (industry partner), and patients and carers, co-designed and evaluated a digital supportive care platform (Brain Tumours Online) to address unmet needs of adults with a primary brain tumour, and to support their families and healthcare professionals.

One of the first steps in the project was to conduct qualitative interviews with patients, carers and health care professionals to better understand their unmet needs and their expectations of an online supportive care platform.

Four key areas emerged from the interviews:

1. Emotional and psychological support: Participants expressed the desire for early and proactive intervention, noted the importance of providing emotional and psychological support to caregivers, and emphasised the need for positive stories and affirmative language.
2. Information support: Participants noted a sense of information overload, especially at the time of diagnosis, and a requirement for a variety of information to be provided that could be accessed for ongoing management as their needs changed.
3. Physical and practical support: Participants described unmet supportive care needs relating to symptom burden, and practical and administrative support to navigate the logistics of accessing treatment and other support services and accomplishing daily life tasks.
4. Social connectedness support: Participants expressed a desire for greater social connectedness and safe spaces to engage with other people in a similar situation.

The findings from these interviews have recently been published in JMIR Cancer (https://cancer.jmir.org/2025/1/e53690) and were used to inform the co-design and development of Brain Tumours Online (https://braintumoursonline.org).

This research provides a practical example of the importance of engaging patients, carers and health care professionals in a co-design process to develop an online supportive care platform built to address the unmet needs expressed by the community it is designed for.

This research was conducted by a cross-disciplinary and multi-institutional team, including The University of Melbourne (Department of Surgery and the Centre for Digital Transformation of Health), the Royal Melbourne Hospital, Peter MacCallum Cancer Centre, St Vincent’s Hospital Melbourne, University Hospital Geelong, an industry partner (DEPT), and people with lived experience of a brain tumour.

Link to full text JMIR Cancer article: https://cancer.jmir.org/2025/1/e53690

Link to Brain Tumours Online: https://braintumoursonline.org