Supporting disabled populations and their unpaid carers through designing sustainable healthcare interventions and infrastructures, is an important, yet challenging, area in HCI research. We report on a collaboration with 23 disabled citizens, unpaid carers, and a care organisation, wishing to co-develop digital responses to challenges they face in the management of self-directed care budgets. We describe how leveraging participatory methods, including asynchronous and remote engagements, enabled the co-creation of a sustainable digital common-pool resource, used by over 5,000 people worldwide. This study contributes novel configurations of methods and tools for co-design with ‘seldom heard’ populations. Demonstrating how these enabled the collective articulation of what constitutes trust, governance, and responsibility, in the design of a digital commons, “MyCareBudget”, offering peer-produced care documents for use by disabled citizens and their unpaid carers. We discuss implications for HCI interested in co-designing sustainable socio-technical interventions with underserved and marginalised populations, in healthcare settings.

The role of HCI in informal caregivers’ lives has been a focus of research for some time. Yet to gain significance in HCI, are the implications of healthcare systems’ transformation into a personalised care paradigm, where citizens gain choice and control over the delivery of their care. We provide a first HCI paper to examine self-directed care budgets for disabled citizens, where care funding is controlled by the individual. We explore how digital technology can assist citizens, promoting peer support to create meaningful, personalised healthcare infrastructures. This qualitative study contributes insights from interviews and focus groups with 24 disabled citizens, informal caregivers and healthcare officers, to provide understanding of their experiences and practices. These insights highlight relational care, invisible labour, power struggles with authorities and how citizens seek socio-technical capability. We contribute design implications for self-directed care budgets and HCI research concerned with developing technologies that support this population.