Enabling Participation of People with Parkinson’s and their caregivers in Co-Inquiry around Collectivist Health Technologies

McNaney, Roisin, Vines, John, Dow, Andy, Robinson, Harry, Robinson, Heather, McDonald, Kate, Brown, Leslie, Santer, Peter, Murray, Don, Murray, Janice, Green, David and Wright, Peter (2018) Enabling Participation of People with Parkinson’s and their caregivers in Co-Inquiry around Collectivist Health Technologies. In: CHI 2018 - 2018 ACM Conference on Human Factors in Computing Systems, 21st - 26th April 2018, Montreal, Canada.

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Abstract

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in ‘Parkinson’s Radio’ — a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research.

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