MyCareBudget: Co-creating a Healthcare Digital Commons with and for Disabled Citizens and their Unpaid Carers

Abstract

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.