JMIR Publications

ABSTRACT

Background:

Brain tumours are a cancer with a high burden of disease that profoundly impact quality of life. Digital health tools hold tremendous potential to revolutionise support that enhances supportive care and quality of life for brain tumour patients and their carers. While co-design with patients and carers is well recognised to contribute to the use and effectiveness of digital health tools, there is frequently a trade-off between best-practice experience-based co-design methods and the ability of patients to participate in co-design workshops within project timelines. This study details interview methods effectively used at the generative co-design phase when workshops may be limited by time, burden of participant disease, and other feasibility issues.

Objective:

This study aimed to generate ideas and concepts, through a co-design paradigm, to inform the development of a digital health tool to address the unmet needs of people affected by brain tumours.

Methods:

By exploring what brain tumour patients want from a digital health platform, we were able to incorporate the patient, carer and health professional voice into a design and development project through 35 qualitative interviews focusing on unmet needs and concepts for a digital health tool. Interviews were audio recorded and transcribed and a five-step Framework Analysis approach used to analyse data.

Results:

Four themes of support needs emerged: emotional and psychological; information; physical and practical; and social connectedness.

Conclusions:

Results indicated that a safe, supportive online tool enabling information sharing as well as connectedness between patients, carers, and health professionals would address key unmet needs of this population, laying the design groundwork for the digital health platform.