Co-designing a wiki-based community knowledge management system for personal science

Abstract

Personal science is the practice of addressing personally relevant health questions through self-research. Implementing personal science can be challenging, owing to the need to develop and adopt research protocols, tools and methods. While online communities can provide valuable peer support, tools for systematically accessing community knowledge are lacking. The objective of this study is to apply a participatory design process involving a community of personal science practitioners to develop a peer-produced knowledge base that supports the needs of practitioners as consumers and contributors of knowledge. The process led to the development of the Personal Science Wiki, an open repository for documenting and accessing individual self-tracking projects while facilitating the establishment of consensus knowledge. After initial design iterations and a field testing phase, we performed a user study with 21 participants to test and improve the platform, and to explore suitable information architectures. The study deepened our understanding of barriers to scaling the personal science community, established an infrastructure for knowledge management actively used by the community and provided lessons on challenges, information needs, representations and architectures to support individuals with their personal health inquiries.

Keywords

• personal science
• patient-led research
• peer production
• wikis
• co-creation
• citizen science