This study explores how an AI-enabled chatbot could support people affected by rare diseases by improving access to trustworthy, understandable, and relevant information. Through a series of co-design workshops, participants will share their experiences, information needs, and perspectives on accuracy, privacy, trust, and the use of AI in health communication. Findings will directly inform the design of an AI chatbot tailored to the rare disease community.
Participants will attend two co-design workshops (approximately 2 hours) involving group discussions and activities focused on information needs, experiences with rare disease resources, and expectations of AI-driven tools. Workshops are collaborative, inclusive, and aimed at ensuring the chatbot reflects real-world needs and priorities.
Dr Sabrina Schaly, University of Sydney
Email: sabrina.schaly@sydney.edu.au
Ongoing recruitment until the final workshop at the end of August
