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Related Experiment Video

Updated: Jun 18, 2025

Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data
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Co-designing a wiki-based community knowledge management system for personal science.

Katharina Kloppenborg1, Mad Price Ball2, Steven Jonas3

  • 1Inserm U1284, Université Paris Cité, Paris, France.

Royal Society Open Science
|July 30, 2024
PubMed
Summary

Personal science, or self-research for health questions, is difficult without accessible tools. This study developed the Personal Science Wiki, a peer-produced knowledge base to support self-trackers and build community knowledge.

Keywords:
citizen scienceco-creationpatient-led researchpeer productionpersonal sciencewikis

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Area of Science:

  • * Personal science and citizen science in health research.
  • * Digital health tools and knowledge management systems.
  • * Participatory design and community-based research.

Background:

  • * Personal science involves self-research for health questions but faces challenges in protocol development and knowledge sharing.
  • * Online communities offer support, but systematic knowledge access tools are lacking for personal science practitioners.
  • * Existing self-tracking data is often siloed, hindering collective learning and consensus building.

Purpose of the Study:

  • * To develop a peer-produced knowledge base supporting personal science practitioners as knowledge consumers and contributors.
  • * To apply a participatory design process with personal science practitioners to create a functional platform.
  • * To address the need for systematic knowledge access and management within the personal science community.

Main Methods:

  • * A participatory design process involving personal science practitioners.
  • * Development of the Personal Science Wiki, an open repository for self-tracking projects.
  • * User study with 21 participants for platform testing, improvement, and information architecture exploration.

Main Results:

  • * Creation of the Personal Science Wiki, an actively used infrastructure for community knowledge management.
  • * Identification of barriers to scaling the personal science community.
  • * Gained insights into information needs, representations, and architectures for personal health inquiries.

Conclusions:

  • * The Personal Science Wiki provides a valuable infrastructure for managing and accessing shared knowledge in personal science.
  • * Participatory design effectively engaged practitioners, leading to a usable and relevant knowledge management tool.
  • * Understanding user needs and information architectures is crucial for supporting individuals in personal health self-research.