Author(s):

  • Enric Senabre Hidalgo
  • Mad P. Ball,
  • Morgane Opoix
  • Bastian Greshake Tzovaras 

Abstract:

Some individuals do not limit their self-tracking efforts to passively collecting and observing gathered data about themselves, but rather develop it into forms of self-research and self-experimentation, also called “personal science”. This type of N-of-1 research is relevant to the fields of personal informatics, patient-led research and social studies of science, but as a knowledge generation practice is still poorly understood. To fill this gap, we conducted 22 semi-structured interviews to investigate the intrinsic and extrinsic motivations of individuals engaging in personal science activities, as well as shared goals and values present in self-research communities. Our analysis is based on a conceptual framework that integrates previous approaches in self-research, as well as in connection with citizen science, the scientific ethos and cooperation in peer production. We identify how self-researchers seek to go beyond personal metrics about their health and wellbeing regarding data provided by wearables, are engaged over time by individual involvement in technology and scientific-related activity, and collaborate following similar goals and values when learning and sharing empirical knowledge with peers. In this sense, personal science can be understood as a specific type of citizen science and an example of a more participatory and inclusive scientific culture driven by self-reflection, critical thinking and openness.

Documentation: https://doi.org/10.1057/s41599-022-01199-0

References:

Ajana B (2017) Digital health and the biopolitics of the quantified self. Digit Health 3:1–18. https://doi.org/10.1177/2055207616689509Article  Google Scholar 

Ajana B (2021) Personal science and the quantified self guru. In: Lawrence S (ed) “I am your guru”: situating Digital Guru Media amidst the neoliberal imperative of self-health management and the ‘post-Truth’ Society. Routledge, London

Almalki M, Gray K, Sanchez FM (2015) The use of self-quantification systems for personal health information: big data management activities and prospects. Health Inf Sci Syst. 3:S1. https://doi.org/10.1186/2047-2501-3-S1-S1Article  PubMed  PubMed Central  Google Scholar 

Benkler, Y. (2004). Commons-based strategies and the problems of patents. Science, 305(5687), 1110–1111

Burnside M, Crocket H, Mayo M, Pickering J, Tappe A, de Bock M (2020) Do-it-yourself automated insulin delivery: a leading example of the democratization of medicine. J Diabetes Sci Technol 14:878–882. https://doi.org/10.1177/1932296819890623Article  PubMed  Google Scholar 

Chiodo S (2021) From je ne sais quoi to quantified self. A philosophical agenda. Studi Estet

Choe EK, Lee NB, Lee B, Pratt W, Kientz JA (2014) Understanding quantified-selfers’ practices in collecting and exploring personal data. In: Proceedings of the SIGCHI Conference on Human Factors in computing systems, CHI ’14. Association for Computing Machinery, New York, NY, USA, pp. 1143–1152

Chrisinger BW (2020) The quantified self-in-place: opportunities and challenges for place-based N-of-1 datasets. Front Comput Sci 2 https://doi.org/10.3389/fcomp.2020.00038

Christiansen TB, Kristensen DB, Larsen JE (2018) The 1-person laboratory of the quantified self community. In: Ajana B (ed) Metric culture. Emerald Publishing Limited, pp. 97–115

Christine DI, Thinyane M (2021) Citizen science as a data-based practice: a consideration of data justice. Patterns 2. https://doi.org/10.1016/j.patter.2021.100224

Couldry, N., & Powell, A (2014). Big data from the bottom up. Big Data & Society, 1(2), 2053951714539277

De Groot M, Drangsholt M, Martin-Sanchez F, Wolf G (2017) Single subject (N-of-1) research design, data processing, and personal science. Methods Inf Med 56:416–418. https://doi.org/10.3414/ME17-03-0001Article  PubMed  Google Scholar 

Dijk ETK, IJsselsteijn WA (2016) Design beyond the numbers: sharing, comparing, storytelling and the need for a Quantified Us. Interact Des Archit 2016:121–135 Google Scholar 

Dijk ETK, Westerink JHDM, Beute F, IJsselsteijn WA (2017) Personal informatics, self-insight, and behavior change: a critical review of current literature. Hum–Comput Interact 32:268–296. https://doi.org/10.1080/07370024.2016.1276456Article  Google Scholar 

Dolejšová M, Kera D (2017) Soylent diet self-experimentation: design challenges in extreme citizen science projects. In: Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing, CSCW ’17. Association for Computing Machinery, New York, NY, USA, pp. 2112–2123

Dulong de Rosnay, M., & Le Crosnier, H (2012). An introduction to the digital commons: From common-pool resources to community governance. Building Institutions for Sustainable Scientific, Cultural and genetic Resources Commons. Louvain-la-Neuve, Belgique: International Association for the Study of the Commons. https://halshs. archivesouvertes. fr/halshs-00736920

Eikey EV, Caldeira CM, Figueiredo MC, Chen Y, Borelli JL, Mazmanian M, Zheng K (2021) Beyond self-reflection: introducing the concept of rumination in personal informatics. Pers. Ubiquitous Comput. https://doi.org/10.1007/s00779-021-01573-w

Epstein DA, Caldeira C, Figueiredo MC, Lu X, Silva LM, Williams L, Lee JH, Li Q, Ahuja S, Chen Q, Dowlatyari P, Hilby C, Sultana S, Eikey EV, Chen Y (2020) Mapping and taking stock of the personal informatics literature. Proc ACM Interact Mob Wearable Ubiquitous Technol 4:1–38. https://doi.org/10.1145/3432231Article  Google Scholar 

Esmonde K (2020) ‘There’s only so much data you can handle in your life’: accommodating and resisting self-surveillance in women’s running and fitness tracking practices. Qual Res Sport Exerc Health 12:76–90. https://doi.org/10.1080/2159676X.2019.1617188Article  Google Scholar 

Ferretti F (2019) Mapping do-it-yourself science. Life Sci Soc Policy 15:1. https://doi.org/10.1186/s40504-018-0090-1Article  PubMed  PubMed Central  Google Scholar 

Fricker M (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University PressGavrila V, Garrity A, Hirschfeld E, Edwards B, Lee JM (2019) Peer support through a diabetes social media community. J Diabetes Sci Technol 13:493–497. https://doi.org/10.1177/1932296818818828Article  PubMed  PubMed Central  Google Scholar 

Gimpel H, Nißen M, Görlitz, R (2013). Quantifying the quantified self: A study on the motivations of patients to track their own health

Grant AD, Wolf GI, Nebeker C (2019) Approaches to governance of participant-led research: a qualitative case study. BMJ Open 9:e025633. https://doi.org/10.1136/bmjopen-2018-025633Article  PubMed  PubMed Central  Google Scholar 

Haklay M (2013) Citizen science and volunteered geographic information: overview and typology of participation. In: Sui D, Elwood S, Goodchild M (eds) Crowdsourcing geographic knowledge: volunteered geographic information (VGI) in theory and practice. Springer Netherlands, Dordrecht, pp. 105–122

Hecker S, Haklay M, Bowser A, Makuch Z, Vogel J, Bonn A (eds) (2018) Citizen Science: innovation in open science, society and policy. UCL Press.

Heyen NB (2016) Self-tracking as knowledge production: quantified self between prosumption and citizen science. In: Selke S (Ed.) Lifelogging: digital self-tracking and lifelogging—between disruptive technology and cultural transformation. Springer Fachmedien, Wiesbaden, pp. 283–301

Heyen NB (2020) From self-tracking to self-expertise: the production of self-related knowledge by doing personal science. Public Underst. Sci 29:124–138. https://doi.org/10.1177/0963662519888757Article  PubMed  Google Scholar 

Heyen NB, Dickel S (2019) Was Ist personal health science? In: Heyen NB, Dickel S, Brüninghaus A (Eds.) Personal health science: Persönliches Gesundheitswissen zwischen Selbstsorge und Bürgerforschung, Öffentliche Wissenschaft und gesellschaftlicher Wandel. Springer Fachmedien, Wiesbaden, pp. 1–19

Jarrahi MH, Gafinowitz N, Shin G (2018) Activity trackers, prior motivation, and perceived informational and motivational affordances. Pers Ubiquitous Comput 22:433–448. https://doi.org/10.1007/s00779-017-1099-9Article  Google Scholar 

Jennett C, Kloetzer L, Schneider D, Iacovides I, Cox A, Gold M, Fuchs B, Eveleigh A, Mathieu K, Ajani Z, Talsi Y (2016) Motivations, learning and creativity in online citizen science. J Sci Commun 15:A05. https://doi.org/10.22323/2.15030205Article  Google Scholar 

Jethani S (2015). Mediating the body: Technology, politics and epistemologies of self. Communication, Politics & Culture, 47(3), 34–43

Jethani S (2021). The Politics and Possibilities of Self-tracking Technology: Data, Bodies and Design. Emerald Group PublishingJin H, Peng Y, Chen J, Park ST (2022) Research on the connotation and dimension of consumers’ quantified-self consciousness. Sustainability 14:1504. https://doi.org/10.3390/su14031504Article  Google Scholar 

Kaziunas E, Lindtner S, Ackerman MS, Lee JM (2018) Lived data: tinkering with bodies, code, and care work. Hum–Comput Interact 33:49–92. https://doi.org/10.1080/07370024.2017.1307749Article  Google Scholar 

Kempner J, Bailey J (2019) Collective self-experimentation in patient-led research: How online health communities foster innovation. Soc Sci Med 238:112366. https://doi.org/10.1016/j.socscimed.2019.112366Article  PubMed  Google Scholar 

Kristensen DB, Ruckenstein M (2018) Co-evolving with self-tracking technologies. New Media Soc 20:3624–3640. https://doi.org/10.1177/1461444818755650Article  Google Scholar 

Li I, Dey A, Forlizzi J (2010) A stage-based model of personal informatics systems. In: Proceedings of the SIGCHI conference on human factors in computing systems. Association for Computing Machinery, New York, NY, USA, pp 557–566

Lupton D (2019) ‘It’s made me a lot more aware’: a new materialist analysis of health self-tracking. Media Int Aust. https://doi.org/10.1177/1329878X19844042

Lupton D, Smith GJD (2018) ‘A much better person’: the agential capacities of self-tracking practices. In: Ajana B (ed) Metric culture. Emerald Publishing Limited, pp. 57–75

Lupton D (2014). Self-Tracking Modes: Reflexive Self-Monitoring and Data Practices Paper for the ‘Imminent Citizenships: Personhood and Identity Politics in the Informatic Age’workshop, 27 August 2014. ANU, Canberra

Lyall B, Robards B (2018) Tool, toy and tutor: subjective experiences of digital self-tracking. J Sociol 54:108–124. https://doi.org/10.1177/1440783317722854Article  Google Scholar 

Marres N, Stark D (2020) Put to the test: For a new sociology of testing. The British Journal of Sociology 71:423–443Article  Google Scholar 

Merton RK (1973) The sociology of science: theoretical and empirical investigations. University of Chicago Press, Chicago Google Scholar 

Moore P, Robinson A (2016) The quantified self: what counts in the neoliberal workplace. New Media Soc 18:2774–2792. https://doi.org/10.1177/1461444815604328Article  Google Scholar 

Munson SA, Schroeder J, Karkar R, Kientz JA, Chung C-F, Fogarty J (2020) The importance of starting with goals in N-of-1 studies. Front Digit Health 2 https://doi.org/10.3389/fdgth.2020.00003

Nafus D (2019) Data Aggregation as Social Relations: Making Datasets from Self-Tracking Data European Review 27:440–454Article  Google Scholar 

Neff G, Nafus D (2016) Self-tracking. MIT PressO’Neil, M, Toupin, S, Pentzold, C (2020). The Duality of Peer Production: Infrastructure for the Digital Commons, Free Labor for Free‐Riding Firms. The Handbook of Peer Production, 1–17

Pantzar M, Ruckenstein M (2017) Living the metrics: self-tracking and situated objectivity. Digit Health 3:2055207617712590. https://doi.org/10.1177/2055207617712590Article  PubMed  PubMed Central  Google Scholar 

Piras EM (2019) Beyond self-tracking: Exploring and unpacking four emerging labels of patient data work Health informaticsjournal 25:598–607Article  Google Scholar 

Rampin R, Steeves V, DeMott S (2021) Taguette. Zenodo. https://doi.org/10.5281/zenodo.5111814

Rapp A, Tirassa M (2017) Know thyself: a theory of the self for personal informatics. Hum–Comput Interact 32:335–380. https://doi.org/10.1080/07370024.2017.1285704Article  Google Scholar 

Rapp A, Cena F, Marcengo A (2018) Editorial of the special issue on quantified self and personal informatics. Computers 7:14. https://doi.org/10.3390/computers7010014Article  Google Scholar 

Régnier F (2018) «Goût de liberté» et self-quantification. Reseaux n° 208-209:95–120 Google Scholar 

Riggare S, Hägglund M, Bredenoord AL, de Groot M, Bloem BR (2021) Ethical aspects of personal science for persons with Parkinson’s disease: what happens when self-tracking goes from selfcare to publication? J Parkinson Dis 1–7. https://doi.org/10.3233/JPD-212647

Riggare S, Scott Duncan T, Hvitfeldt H, Hägglund M (2019) “You have to know why you’re doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson’s disease. BMC Med Inform Decis Mak 19, 175. https://doi.org/10.1186/s12911-019-0896-7

Riggare-Södergren S (2022) Personal science in Parkinson’s disease—a patient-led research study. [S.l.]: [S.n.]Roberts S (2004) Self-experimentation as a source of new ideas: ten examples about sleep, mood, health, and weight. Behav Brain Sci. 27:227–288PubMed  Google Scholar 

Rooksby J, Rost M, Morrison A, Chalmers M (2014) Personal tracking as lived informatics. In: Proceedings of the SIGCHI Conference on Human Factors in computing systems, CHI ’14. Association for Computing Machinery, New York, NY, USA, pp. 1163–1172

Rotman D, Preece J, Hammock J, Procita K, Hansen D, Parr C, … & Jacobs D (2012, February). Dynamic changes in motivation in collaborative citizen-science projects. In Proceedings of the ACM 2012 conference on computer supported cooperative work (pp. 217–226)

Ruckenstein M (2014) Visualized and interacted life: Personal analytics and engagements with data doubles Societies 4:68–84Article  Google Scholar 

Ruckenstein M, Schüll ND (2017) The datafication of health. Annu Rev Anthropol 46:261–278. https://doi.org/10.1146/annurev-anthro-102116-041244Article  Google Scholar 

Ruckenstein M, Pantzar M (2017) Beyond the quantified self: thematic exploration of a dataistic paradigm. New Media Soc 19:401–418. https://doi.org/10.1177/1461444815609081Article  Google Scholar 

Schüll, ND (2018). Self in the loop: Bits, patterns, and pathways in the quantified self. In A networked self and human augmentics, artificial intelligence, sentience (pp. 25–38). Routledge

Sharon T (2017) Self-tracking for health and the quantified self: re-articulating autonomy, solidarity, and authenticity in an age of personalized healthcare. Philos Technol 30:93–121. https://doi.org/10.1007/s13347-016-0215-5Article  Google Scholar 

Sharon T, Zandbergen D (2017) From data fetishism to quantifying selves: self-tracking practices and the other values of data. New Media Soc 19:1695–1709. https://doi.org/10.1177/1461444816636090Article  Google Scholar 

Shevchenko SY, Petrov KA, Filatova AA (2021) Biohacking: changing yourself to reformat science. Chelovek 32:58–73. https://doi.org/10.31857/S023620070018008-5Article  Google Scholar 

Spaeth S, Niederhöfer S (2020) User motivations in peer production. In: The handbook of peer production. John Wiley & Sons, Ltd., pp. 123–136

Trace CB, Zhang Y (2019) The quantified-self archive: documenting lives through self-tracking data. J Doc 76:290–316. https://doi.org/10.1108/JD-04-2019-0064Article  Google Scholar 

van de Belt TH, de Croon A, Freriks F, Christiansen TB, Larsen JE, de Groot M (2022) Barriers to and facilitators of using a one button tracker and web-based data analytics tool for personal science: exploratory study. JMIR Form Res 6:e32704. https://doi.org/10.2196/32704Article  PubMed  PubMed Central  Google Scholar 

Vayena E, Brownsword R, Edwards SJ, Greshake B, Kahn JP, Ladher N, Montgomery J, O’Connor D, O’Neill O, Richards MP, Rid A, Sheehan M, Wicks P, Tasioulas J (2016) Research led by participants: a new social contract for a new kind of research. J Med Ethics 42:216–219. https://doi.org/10.1136/medethics-2015-102663Article  PubMed  Google Scholar 

Vuolanto P, Bergroth H, Nurmi J, Salmenniemi S (2020) Reconfiguring health knowledges? Contemporary modes of self-care as ‘everyday fringe medicine. Public Underst Sci 29:508–523. https://doi.org/10.1177/0963662520934752Article  PubMed  PubMed Central  Google Scholar 

Weisse AB (2012) Self-experimentation and its role in medical research. Tex Heart Inst J 39:51–54PubMed  PubMed Central  Google Scholar 

West S, Dyke A, Pateman R (2021) Variations in the motivations of environmental citizen scientists. Citiz Sci Theory Pract 6:14. https://doi.org/10.5334/cstp.370Article  Google Scholar 

Wolf GI, De Groot M (2020) A conceptual framework for personal science. Front Comput Sci 2. https://doi.org/10.3389/fcomp.2020.00021

Zhao J, Wang T, Fan X (2015) Patient value co-creation in online health communities: social identity effects on customer knowledge contributions and membership continuance intentions in online health communities. J Serv Manag 26:72–96. https://doi.org/10.1108/JOSM-12-2013-0344Article  Google Scholar