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.
https://doi.org/10.1145/3544548.3580934
The ACM CHI Conference on Human Factors in Computing Systems (https://chi2023.acm.org/)