IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v238y2019ic24.html
   My bibliography  Save this article

Collective self-experimentation in patient-led research: How online health communities foster innovation

Author

Listed:
  • Kempner, Joanna
  • Bailey, John

Abstract

Researchers across academia, government, and private industry increasingly value patient-led research for its ability to produce quick results from large samples of the population. This study examines the role played by self-experimentation in the production of health data collected in these projects. We ask: How does the collaborative context of online health communities, with their ability to facilitate far-reaching collaborations over time and space, transform the practice and epistemological foundations of engaging in n = 1 experimentation? We draw from a digital ethnography of an online patient-led research movement, in which participants engage in self-experiments to develop a protocol for using psilocybe-containing mushrooms as a treatment for cluster headache, an excruciating neurological disease for which there is little medical research and huge unmet treatment need. We find that the collectivizing features of the internet have collectivized self-experimentation. Group dynamics shape everything in “collective self-experimentation,” from individual choices of intervention, reporting of outcomes, data analysis, determinations of efficacy, to embodiment. This study raises important questions about the role that individuals play in the creation of medical knowledge and the data that informs crowdsourced research.

Suggested Citation

  • Kempner, Joanna & Bailey, John, 2019. "Collective self-experimentation in patient-led research: How online health communities foster innovation," Social Science & Medicine, Elsevier, vol. 238(C), pages 1-1.
  • Handle: RePEc:eee:socmed:v:238:y:2019:i:c:24
    DOI: 10.1016/j.socscimed.2019.112366
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S027795361930351X
    Download Restriction: Full text for ScienceDirect subscribers only

    File URL: https://libkey.io/10.1016/j.socscimed.2019.112366?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Barbot, Janine, 2006. "How to build an "active" patient? The work of AIDS associations in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 538-551, February.
    2. Jannis Kallinikos & Niccolò Tempini, 2014. "Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation," Information Systems Research, INFORMS, vol. 25(4), pages 817-833, December.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Enric Senabre Hidalgo & Mad P. Ball & Morgane Opoix & Bastian Greshake Tzovaras, 2022. "Shared motivations, goals and values in the practice of personal science: a community perspective on self-tracking for empirical knowledge," Palgrave Communications, Palgrave Macmillan, vol. 9(1), pages 1-12, December.
    2. Campbell, Patricia A., 2021. "Lay participation with medical expertise in online self-care practices: Social knowledge (co)production in the Running Mania injury forum," Social Science & Medicine, Elsevier, vol. 277(C).

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Liuan Wang & Lu (Lucy) Yan & Tongxin Zhou & Xitong Guo & Gregory R. Heim, 2020. "Understanding Physicians’ Online-Offline Behavior Dynamics: An Empirical Study," Information Systems Research, INFORMS, vol. 31(2), pages 537-555, June.
    2. Britten, Nicky & Denford, Sarah & Harris-Golesworthy, Faith & Jibson, Steph & Pyart, Nigel & Stein, Ken, 2015. "Patient involvement in drug licensing: A case study," Social Science & Medicine, Elsevier, vol. 131(C), pages 289-296.
    3. Alaimo, Cristina & Kallinikos, Jannis, 2022. "Organizations decentered: data objects, technology and knowledge," LSE Research Online Documents on Economics 112470, London School of Economics and Political Science, LSE Library.
    4. Maha Shaikh & Emmanuelle Vaast, 2023. "Algorithmic Interactions in Open Source Work," Information Systems Research, INFORMS, vol. 34(2), pages 744-765, June.
    5. Ghezzi, Antonio & Gastaldi, Luca & Lettieri, Emanuele & Martini, Antonella & Corso, Mariano, 2016. "A role for startups in unleashing the disruptive power of social media," International Journal of Information Management, Elsevier, vol. 36(6), pages 1152-1159.
    6. Vololona Rabeharisoa, 2013. "Evidence-based activism: Patients’ organisations, users’ and activist’s groups in knowledge society," CSI Working Papers Series 033, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    7. Amit K. Srivastava & Rajhans Mishra, 2023. "Analyzing Social Media Research: A Data Quality and Research Reproducibility Perspective," IIM Kozhikode Society & Management Review, , vol. 12(1), pages 39-49, January.
    8. Paul M. Gangi & Allen C. Johnston & James L. Worrell & Samuel C. Thompson, 0. "What could possibly go wrong? A multi-panel Delphi study of organizational social media risk," Information Systems Frontiers, Springer, vol. 0, pages 1-20.
    9. Yang, Hualong & Li, Dan, 2021. "Health management gamification: Understanding the effects of goal difficulty, achievement incentives, and social networks on performance," Technological Forecasting and Social Change, Elsevier, vol. 169(C).
    10. Watkins-Hayes, Celeste & Pittman-Gay, LaShawnDa & Beaman, Jean, 2012. "‘Dying from’ to ‘living with’: Framing institutions and the coping processes of African American women living with HIV/AIDS," Social Science & Medicine, Elsevier, vol. 74(12), pages 2028-2036.
    11. Balta, Maria & Valsecchi, Raffaella & Papadopoulos, Thanos & Bourne, Dorota Joanna, 2021. "Digitalization and co-creation of healthcare value: A case study in Occupational Health," Technological Forecasting and Social Change, Elsevier, vol. 168(C).
    12. Lisha Ye & Huiqin Yang, 2020. "From Digital Divide to Social Inclusion: A Tale of Mobile Platform Empowerment in Rural Areas," Sustainability, MDPI, vol. 12(6), pages 1-16, March.
    13. Donghua Chen & Runtong Zhang & Kecheng Liu & Lei Hou, 2018. "Knowledge Discovery from Posts in Online Health Communities Using Unified Medical Language System," IJERPH, MDPI, vol. 15(6), pages 1-16, June.
    14. Michael Barrett & Eivor Oborn & Wanda Orlikowski, 2016. "Creating Value in Online Communities: The Sociomaterial Configuring of Strategy, Platform, and Stakeholder Engagement," Information Systems Research, INFORMS, vol. 27(4), pages 704-723, December.
    15. Madeleine Akrich & Maire Leane & Celia Roberts & João Arriscado Nunes, 2012. "Practising childbirth activism: a politics of evidence," CSI Working Papers Series 023, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    16. Kawaljeet Kaur Kapoor & Kuttimani Tamilmani & Nripendra P. Rana & Pushp Patil & Yogesh K. Dwivedi & Sridhar Nerur, 2018. "Advances in Social Media Research: Past, Present and Future," Information Systems Frontiers, Springer, vol. 20(3), pages 531-558, June.
    17. Petrakaki, Dimitra & Hilberg, Eva & Waring, Justin, 2018. "Between empowerment and self-discipline: Governing patients' conduct through technological self-care," Social Science & Medicine, Elsevier, vol. 213(C), pages 146-153.
    18. Petrakaki, Dimitra & Hilberg, Eva & Waring, Justin, 2021. "The Cultivation of Digital Health Citizenship," Social Science & Medicine, Elsevier, vol. 270(C).
    19. Barbot, Janine & Parizot, Isabelle & Winance, Myriam, 2014. "“No-fault” compensation for victims of medical injuries. Ten years of implementing the French model," Health Policy, Elsevier, vol. 114(2), pages 236-245.
    20. Chris Forman & John Leslie King & Kalle Lyytinen, 2014. "Special Section Introduction—Information, Technology, and the Changing Nature of Work," Information Systems Research, INFORMS, vol. 25(4), pages 789-795, December.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:238:y:2019:i:c:24. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.