Designing socio-technical responses with disabled citizens and their unpaid carers for enhanced access to personal health budgets

Abstract

Over the past decade, the field of Human-Computer Interaction (HCI) has attended to the experiences of unpaid carers, specifically, the challenges they face in integrating siloed healthcare systems. Such challenges have been found to be exacerbated for those individuals with long-term complex conditions and their unpaid carers when they receive Personal Health Budgets’ (PHBs). PHBs are one aspect of a personalised care model in the global north, designed to offer individuals with long-term complex conditions and their unpaid carers the flexibility to tailor healthcare services to fit their personal needs and preferences, aiming to enhance their autonomy and improve overall wellbeing. However, the pragmatic application of PHBs within neoliberal service provision raises questions concerning the offloading of labour and responsibilities onto an already marginalised and underserved population. HCI has yet to investigate the impact of such budgets on disabled citizens and unpaid carers, on how research can contribute to service design and policymaking for PHBs and, explore how Participatory Design (PD) can be configured to engage with this time-constrained population characterised by their priority of caregiving. This study examines the experiences of disabled individuals and their unpaid carers, and how participatory engagements can support their ongoing efforts to improve access to the benefits of PHBs. A mixed-methods approach was taken to engage with 64 participants, comprising disabled citizens, unpaid carers, voluntary sector staff, and healthcare officials. Participatory methods, including longitudinal asynchronous / synchronous remote group engagements, were used to develop understanding of their challenges and facilitate the co-creation of a sustainable digital common-pool resource. I describe and evaluate how the resource, “MyCareBudget”, was co-designed with the citizen participants to provide peer-produced care documentation for recipients of PHBs and has been in use since 2021, serving over 5,500 individuals globally. The research contributes innovative configurations of methodologies and tools for engaging with this population, and insights regarding relational care, invisible labour, power dynamics with authority figures, and the pursuit of socio-technical capability. I discuss implications for HCI concerned with the creation of more effective and equitable healthcare responses for marginalised communities, including challenges at play in coproduction, appropriate engagement methods for the co-design of sustainable sociotechnical interventions, and conceptual frameworks for their assessments.