Epistemic agency in self-tracking: a conceptual literature review of quantified self as citizen science for health
Sara S. Riggare, Thomas Blomseth Christiansen, Jakob Eg Larsen, Steven Jonas, Gary Wolf, Martijn de Groot
Uppsala University Technical University of Denmark Radboud University Medical Center
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Introduction: Citizen science for health invites non-professionals into research, but the degree to which individuals control the knowledge-making process varies widely. Personal science-the self-directed, inquiry-driven practice associated with the Quantified Self (QS) community-represents a high-agency form of self-tracking in which the individual is both subject and scientist. Drawing on work on epistemic injustice, we use "epistemic agency" to describe whether a person exercises genuine control over inquiry rather than merely supplying data. Aim: To assess the utility of an agency-based framework for characterizing the epistemic dimension of self-tracking, and to examine how personal science has been represented in the scientific literature. Methods: Following Jaakkola's theory-synthesis approach, we developed a four-phase analytical framework (questioning, observing, reasoning, discovering) with three levels of individual agency (low agency, mixed agency, high agency). A search of Web of Science and PubMed (April-May 2025) for "quantified self" yielded 721 records; 241 were retained for analysis, of which 46 used self-tracking as the data-collection method and were classified by agency level through independent dual-author review. Results: The 46 articles spanned the full agency spectrum: 17 low, 10 mixed, and 19 high. Low-agency studies treated individuals as data sources, whereas high-agency studies displayed the complete self-directed cycle, often with the self-tracker as co-author. Data-sharing dominated low-agency accounts, while sharing of methods and experiences characterized higher-agency work. Conclusion: . Personal science can be seen as a high-agency dimension of citizen science for health.
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