{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T06:25:32Z","timestamp":1787034332634,"version":"build-2736575974"},"reference-count":78,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T00:00:00Z","timestamp":1787011200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Citizen science for health invites non-professionals into research, but the degree to which individuals control the knowledge-making process varies widely. Personal science\u2014the self-directed, inquiry-driven practice associated with the Quantified Self (QS) community\u2014represents a high-agency form of self-tracking in which the individual is both subject and scientist. Drawing on work on epistemic injustice, we use \u201cepistemic agency\u201d to describe whether a person exercises genuine control over inquiry rather than merely supplying data.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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\u2013May 2025) for \u201cquantified self\u201d 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>\n                      The framework can meaningfully distinguish merely measurement from self-directed knowledge production, turning on\n                      <jats:italic>who owns the question<\/jats:italic>\n                      . Personal science can be seen as a high-agency dimension of citizen science for health.\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fpubh.2026.1736850","type":"journal-article","created":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T05:38:01Z","timestamp":1787031481000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Epistemic agency in self-tracking: a conceptual literature review of quantified self as citizen science for health"],"prefix":"10.3389","volume":"14","author":[{"given":"Sara","family":"Riggare","sequence":"first","affiliation":[{"name":"Participatory eHealth and Health Data, Department for Women's and Children's Health, Uppsala University","place":["Uppsala, Sweden"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas Blomseth","family":"Christiansen","sequence":"additional","affiliation":[{"name":"Konsulent Blomseth","place":["Hj\u00f8rring, Denmark"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jakob Eg","family":"Larsen","sequence":"additional","affiliation":[{"name":"Department of Applied Mathematics and Computer Science, Technical University of Denmark","place":["Kongens Lyngby, Denmark"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Steven","family":"Jonas","sequence":"additional","affiliation":[{"name":"Article 27 Foundation","place":["Berkeley, CA, United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gary Isaac","family":"Wolf","sequence":"additional","affiliation":[{"name":"Article 27 Foundation","place":["Berkeley, CA, United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martijn","family":"de Groot","sequence":"additional","affiliation":[{"name":"Health Innovation Labs, Radboud University Medical Centre","place":["Nijmegen, Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,8,18]]},"reference":[{"key":"B1","doi-asserted-by":"crossref","DOI":"10.1007\/978-3-319-92177-8","volume-title":"Participatory Health Research: Voices From Around the World","author":"Wright","year":"2018"},{"key":"B2","doi-asserted-by":"publisher","first-page":"327","DOI":"10.1111\/hex.12618","article-title":"Optimizing patient and public involvement (PPI): Identifying its \u201cessential\u201d and \u201cdesirable\u201d principles using a systematic review and modified Delphi methodology","volume":"21","author":"Baines","year":"2018","journal-title":"Health Expect."},{"key":"B3","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1186\/s41687-022-00437-y","article-title":"The role of patient and public involvement and engagement (PPIE) within the development of the EQ health and wellbeing (EQ-HWB)","volume":"6","author":"Carlton","year":"2022","journal-title":"J Patient-Rep Outcomes."},{"key":"B4","doi-asserted-by":"publisher","first-page":"101","DOI":"10.1186\/s13643-018-0762-1","article-title":"Patient-oriented research competencies in health (PORCH) for patients, healthcare providers, decision-makers and researchers: protocol of a scoping review","volume":"7","author":"Mallidou","year":"2018","journal-title":"Syst Rev."},{"key":"B5","doi-asserted-by":"publisher","first-page":"S40","DOI":"10.2105\/AJPH.2009.184036","article-title":"Community-Based Participatory Research Contributions to Intervention Research: The Intersection of Science and Practice to Improve Health Equity","volume":"100","author":"Wallerstein","year":"2010","journal-title":"Am J Public Health."},{"key":"B6","doi-asserted-by":"publisher","first-page":"e002309","DOI":"10.1136\/bmjoq-2023-002309","article-title":"Patient engagement in the development and delivery of healthcare services: a systematic scoping review","volume":"12","author":"Sagen","year":"2023","journal-title":"BMJ Open Qual."},{"key":"B7","doi-asserted-by":"publisher","first-page":"e053735","DOI":"10.1136\/bmjopen-2021-053735","article-title":"Patient-driven innovations reported in peer-reviewed journals: a scoping review","volume":"12","author":"Reinius","year":"2022","journal-title":"BMJ Open."},{"key":"B8","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3389\/fcomp.2020.00021","article-title":"A conceptual framework for personal science","volume":"2","author":"Wolf","year":"2020","journal-title":"Front Comput Sci."},{"key":"B9","first-page":"79","article-title":"Self-experimentation: a call for change! 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