Designing for Participatory Data Governance: Insights from People with Parkinson's

In today's age of data-driven healthcare, the growing utilization of health data to inform critical aspects of patient care and medical research places an ever increasing significance on its governance. This study aims to explore the perspectives of individuals living with Parkinson's Disease regarding their needs and preferences in relation to data governance. We first conducted a survey (n=52) to explore the types of data people with Parkinson's generate through their self-care practices, and then conducted 3 workshops with 9 participants to understand their perspectives on the governance of this type of data. Through this work, we highlight the factors that motivate them to collect self-care data, and present their requirements for its governance, which could inform the design of future infrastructure to support these needs. We also showcase how speculative approaches can be used to engage communities in discussions around data collection and governance.