Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2023

Design of Patient-Centered Digital Health Interventions: Leveraging Input from Patients with Brain Tumours for Unmet Supportive Care Needs (#471)

Mahima Kalla 1 2 , Ashleigh Bradford 3 , Verena Schadewaldt 4 , Kara Burns 1 2 , Sarah Bray 4 , Sarah Cain 4 , Heidi McAlpine 4 , Rana Dhillon 5 6 , Wendy Chapman 2 , James R Whittle 7 8 9 , Katharine J Drummond 10 , Meinir Krishnasamy 3 11 12
  1. Uni of Melbourne, Carlton, VIC, Australia
  2. Centre for Digital Transformation of Health, University of Melbourne, Melbourne
  3. Peter MacCallum Cancer Centre, Melbourne
  4. Royal Melbourne Hospital, Melbourne
  5. Barwon Health, Geelong
  6. St Vincent’s Hospital , Melbourne
  7. Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne
  8. Personalised Oncology Division, WEHI, Melbourne
  9. Department of Medical Biology, University of Melbourne, Melbourne
  10. Department of Neurosurgery, University of Melbourne, Melbourne
  11. Department of Nursing, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne , Melbourne
  12. VCCC Alliance, Melbourne

Typically, people who have brain tumours will experience persistent, distressing and disabling physical, psychosocial, cognitive, and financial challenges. These challenges are compounded by the difficulties in connecting and communicating with their treating team, establishing peer support networks, managing their symptoms, and accessing personalised supportive care, especially for rural patients. Digital health interventions can address access and equity barriers to cancer services by overcoming geographic, physical, and psychological barriers, facilitating access to treatment, support, and education for patients within convenient timeframes and their own environments. Our team set out to co-design a supportive care digital resource to mitigate the unmet needs of Australians affected by brain tumours, no matter where they live. Using an evidence informed framework and data from studies previously undertaken by members of our team, we developed Brain Tumours Online, a novel Australian digital health solution. This paper focuses specifically on one step in the co-design process -  a qualitative interview study with consumers and multidisciplinary health care professionals to generate an in-depth understanding of needs and preferences for a digital health solution, to address needs currently unmet by face to face care delivery approaches. True to consumers’ preferences expressed in our co-design activities, our platform provides supportive psychosocial care for patients and their carers, via three key pillars: a) Learn: a curated repository of vetted evidence-based information about symptoms, treatment options, available psychosocial / allied health supports, and other practical information (e.g. preparing for return to work/study, navigating welfare support etc.); b) Connect: an online peer support community that allows patients and their informal caregivers to connect with each other and healthcare professionals in a variety of formats; and c) Toolbox: a selection of validated self-management digital health tools to support symptom management and self-care for other psychosocial needs.