Non-knowledge in Medical Practices: Approaching the Uses of Social Media in Healthcare from an Epistemological Perspective

Authors

  • Anna Sendra Tampere University, Finland
  • Sinikka Torkkola Tampere University, Finland
  • Jaana Parviainen Tampere University, Finland

DOI:

https://doi.org/10.33621/jdsr.v5i1.152

Keywords:

social media, embodied knowledge, health professionals, patients, ignorance studies, social epistemology

Abstract

Social media has transformed how individuals handle their illnesses. While many patients increasingly use these online platforms to understand embodied information surrounding their conditions, healthcare professionals often frame these practices as negative and do not consider the expertise that patients generate through social media. Through a combination of insights from social epistemology and ignorance studies, this paper problematizes the distinctive understandings of social media between patients and healthcare professionals from a different perspective. A total of four ideas are introduced: (1) healthcare professionals see embodied knowledge that arises from patients’ social media practices as uncomfortable knowledge; (2) healthcare professionals engage in several behaviours to preserve their authority and power in front of embodied knowledge created through these online platforms; (3) failing to consider embodied knowledge can have consequences not only in terms of trust between patients and healthcare professionals but also in connection with epistemological populism and the transition towards patient-centred care; and (4) media and digital health literacy could help healthcare professionals enhance the uses of social media in healthcare. Adopting this framework allows not only to offer valuable insights into how healthcare professionals manage patients’ social media practices, but also opens new avenues to improve healthcare digitisation.

References

Ahmed, W., Jagsi, R., Gutheil, T.G., and M.S. Katz. 2020. Public disclosure on social media of identifiable patient information by health professionals: Content analysis of Twitter data. Journal of Medical Internet Research 22 (9): e19746. https://doi.org/10.2196/19746

Akrich, M. 2010. From communities of practice to epistemic communities: Health mobilizations on the Internet. Sociological Research Online 15 (2): 1–17. https://doi.org/10.5153/sro.2152

Barrett, M., Oborn, E., and W. Orlikowski. 2016. Creating value in online communities: The sociomaterial configuring of strategy, platform, and stakeholder engagement. Information Systems Research 27 (4): 704–723. https://doi.org/10.1287/isre.2016.0648

Bellander, T., and M. Lanqvist. 2020. Becoming the expert constructing health knowledge in epistemic communities online. Information, Communication & Society 23 (4): 507–522. https://doi.org/10.1080/1369118X.2018.1518474

Benetoli, A., Chen, T.F., and P. Aslani. 2018. How patients’ use of social media impacts their interactions with healthcare professionals. Patient Education and Counseling 101 (3): 439–444. https://doi.org/10.1016/j.pec.2017.08.015

Bimber, B., and H. Gil de Zúñiga. 2020. The unedited public sphere. New Media & Society 22 (4): 700–715. https://doi.org/10.1177/1461444819893980

Blease, C., Carel, H., and K. Geraghty. 2017. Epistemic injustice in healthcare encounters: Evidence from chronic fatigue syndrome. Journal of Medical Ethics 43 (8): 549–557. http://dx.doi.org/10.1136/medethics-2016-103691

Briggs, C.L., and D.C. Hallin. 2016. Making health public: How news coverage is remaking media, medicine, and contemporary life. London and New York: Routledge.

Callard, F., and E. Perego. 2021. How and why patients made Long Covid. Social Science & Medicine 268: 113426. https://doi.org/10.1016/j.socscimed.2020.113426

Costa-Sánchez, C., and M. Míguez-González. 2018. Use of social media for health education and corporate communication of hospitals. El Professional de la Información 27 (5): 1145–1154. https://doi.org/10.3145/epi.2018.sep.18

Curtis, F., and J. Gillen. 2019. “I don’t see myself as a 40-year-old on Facebook”: Medical students’ dilemmas in developing professionalism with social media. Journal of Further and Higher Education 43 (2): 251–262. https://doi.org/10.1080/0309877X.2017.1359503

Dawkins, H.J.S., Draghia-Akli, R., Lasko, P., Lau, L.P.L., Jonker, A.H., Cutillo, C.M., Rath, A., Boycott, K.M., Baynam, G., Lochmüller, H., Kaufmann, P., Le Cam, Y., Hivert, V., Austin, C.P., and International Rare Diseases Research Consortium (IRDiRC). 2018. Progress in rare diseases research 2010–2016: An IRDiRC perspective. Clinical and Translational Science 11 (1): 11–20. https://doi.org/10.1111/cts.12501

El Kassar, N. 2018. What ignorance really is: Examining the foundations of epistemology of ignorance. Social Epistemology 32 (5): 300–310. https://doi.org/10.1080/02691728.2018.1518498

Ellingson, L.L. 2006. Embodied knowledge: Writing researchers’ bodies into qualitative health research. Qualitative Health Research 16 (2): 298–310. https://doi.org/10.1177/1049732305281944

Erikainen, S., Pickersgill, M., Cunningham-Burley, S., and S. Chan. 2019. Patienthood and participation in the digital era. Digital Health 5: 2055207619845546. https://doi.org/10.1177/2055207619845546

Flear, M.L. 2019. Epistemic injustice as a basis for failure? Health research regulation, technological risk and the foundations of harm and its prevention. European Journal of Risk Regulation 10 (4): 693–721. https://doi.org/10.1017/err.2019.67

Fricker, M. 2007. Epistemic injustice: Power & the ethics of knowing. Oxford: Oxford University Press.

Fuller, S. 2002. Social epistemology (2nd ed.). Bloomington: Indiana University Press.

Gross, M. 2019. Not Knowing as Luxury: Strategic Nonknowledge and the Demand for a “Sportbrake”. Luxury 6 (1): 63–81. https://doi.org/10.1080/20511817.2018.1738705

Gross, M., and L. McGoey. 2015. Introduction. In Routledge international handbook of ignorance studies, ed. M. Gross and L. McGoey, 1–14. London and New York: Routledge.

Gross, M., and L. McGoey. 2022. Revolutionary epistemology: the promise and peril of ignorance studies. In Routledge international handbook of ignorance studies (2nd ed.), ed. M. Gross and L. McGoey, 3–14. London and New York: Routledge.

Hallqvist, J. 2019. Digital health and the embodying of professionalism: Avatars as health professionals in Sweden. Professions and Professionalism 9 (2): e2847. https://doi.org/10.7577/pp.2847

Harris, J.K., Mueller, N.L., and D. Snider. 2013. Social media adoption in local health departments nationwide. American Journal of Public Health 103 (9): 1700–1707. https://doi.org/10.2105/AJPH.2012.301166

Hernandez, R.G., Hagen, L., Walker, K., O’Leary, H., and C. Lengacher. 2021. The COVID-19 vaccine social media infodemic: Healthcare providers’ missed dose in addressing misinformation and vaccine hesitancy. Human Vaccines & Immunotherapeutics 17 (9): 2962–2964. https://doi.org/10.1080/21645515.2021.1912551

Hofmann, B., and F. Svenaeus. 2018. How medical technologies shape the experience of illness. Life Sciences, Society and Policy 14 (1): 3. https://doi.org/10.1186/s40504-018-0069-y

Jasanoff, S., and S. Kim. 2009. Containing the atom: Sociotechnical imaginaries and nuclear power in the United States and South Korea. Minerva 47 (2): 119–146. https://doi.org/10.1007/s11024-009-9124-4

Jasper, U. 2020. The anticipative medicalization of life: Governing future risk and uncertainty in (global) health. In The politics and science of prevision: Governing and probing the future, ed. A. Wenger, U. Jasper and M.D. Cavelty, 122–140. London: Routledge.

Jones, S., Chudleigh, M., Baines, R., and R.B. Jones. 2021. Did introducing Twitter and digital professionalism as an assessed element of the nursing curriculum impact social media related incidence of ‘Fitness to practise’: 12-year case review. Nurse Education in Practice 50: 102950. https://doi.org/10.1016/j.nepr.2020.102950

Kerwin, A. 1993. None too solid: Medical ignorance. Knowledge 15 (2): 166–185. https://doi.org/10.1177/107554709301500204

Killbride, M.K., and S. Joffe. 2018. The new age of patient autonomy: Implications for the patient-physician relationship. JAMA: The Journal of the American Medical Association 320 (19): 1973–1974. https://doi.org/10.1001/jama.2018.14382

Larson, H.J. 2018. The biggest pandemic risk? Viral misinformation. Nature 562 (7727): 309. https://doi.org/10.1038/d41586-018-07034-4

Laurent-Simpson, A., and C.C. Lo. 2019. Risk society online: Zika virus, social media and distrust in the Centers for Disease Control and Prevention. Sociology of Health & Illness 41 (7): 1270–1288. https://doi.org/10.1111/1467-9566.12924

Lupton, D. 2014. The commodification of patient opinion: The digital patient experience economy in the age of big data. Sociology of Health & Illness 36 (6): 856–869. https://doi.org/10.1111/1467-9566.12109

Lupton, D. 2018. Digital health: Critical and cross-disciplinary perspectives. London: Routledge.

Manning-Cork, N. 2019. Advancing professionalism, attentive to culture, to improve health systems. Medical Education 53 (11): 1069–1071. https://doi.org/10.1111/medu.13960

Marchal, N., and H. Au. 2020. “Coronavirus EXPLAINED”: YouTube, COVID-19, and the socio-technical mediation of expertise. Social Media + Society 6 (3): 205630512094815. https://doi.org/10.1177/2056305120948158

Martin, G.P., Currie, G., and R. Finn. 2009. Reconfiguring or reproducing intra-professional boundaries? Specialist expertise, generalist knowledge and the ‘modernization’ of the medical workforce. Social Science & Medicine 68 (7): 1191–1198. https://doi.org/10.1016/j.socscimed.2009.01.006

Maslen, S., and D. Lupton. 2019. ‘Keeping it real’: Women’s enactments of lay health knowledges and expertise on Facebook. Sociology of Health & Illness 41 (8): 1637–1651. https://doi.org/10.1111/1467-9566.12982

Mather, C.A., and E. Cummings. 2019. Developing and sustaining digital professionalism: A model for assessing readiness of healthcare environments and capability of nurses. BMJ Health & Care Informatics 26 (1): e100062. http://dx.doi.org/10.1136/bmjhci-2019-100062

McGoey, L. 2012. The logic of strategic ignorance. The British Journal of Sociology 63 (3): 533–576. https://doi.org/10.1111/j.1468-4446.2012.01424.x

McGoey, L. 2020. Micro-ignorance and macro-ignorance in the social sciences. Social Research 87 (1): 197–217. https://doi.org/10.1353/sor.2020.0014

McPherson, S., Rost, F., Sidhu, S., and M. Dennis. 2020. Non-strategic ignorance: Considering the potential for a paradigm shift in evidence-based mental health. Health 24 (1): 3–20. https://doi.org/10.1177/1363459318785720

Naples, R., Costas-Chavarri, A., Golden, D.W., Gmitter, E., French, J.C., and J.M. Lipman. 2020. Digital professionalism in patient care: A case-based survey of surgery faculty and trainees. The Journal of Surgical Research 253: 193–200. https://doi.org/10.1016/j.jss.2020.03.057

Nerland, M., and M. Hasu. 2021. Challenging the belief in simple solutions: The need for epistemic practices in professional work. Medical Education 55 (1): 65–71. https://doi.org/10.1111/medu.14294

Nie, J., Cheng, Y., Zou, X., Gong, N., Tucker, J.D., Wong, B., and A. Kleinman. 2018. The vicious circle of patient–physician mistrust in China: Health professionals’ perspectives, institutional conflict of interest, and building trust through medical professionalism. Developing World Bioethics 18 (1): 26–36. https://doi.org/10.1111/dewb.12170

Nielsen, R.K., and L. Graves. 2017. “News you don’t believe”: Audience perspectives on fake news. Reuters Institute for the Study of Journalism. https://reutersinstitute.politics.ox.ac.uk/sites/default/files/2017-10/Nielsen%26Graves_factsheet_1710v3_FINAL_download.pdf. Accessed 21 June 2021.

Numerato, D., Vochocová, L., Št?tka, V., and A. Macková. 2019. The vaccination debate in the “post-truth” era: Social media as sites of multi-layered reflexivity. Sociology of Health & Illness 41 (S1): 82–97. https://doi.org/10.1111/1467-9566.12873

Palomino-Gonzales, M.M., Lovón-Cueva, M.A., and R.d.C. Arellanos-Tafur. 2020. The health network and its participation in the dissemination or containment of fake news and hoaxes related to COVID-19: The case of Lima-Peru. Chasqui: Revista Latinoamericana De Comunicación 1 (145): 93–118. https://revistachasqui.org/index.php/chasqui/article/view/4332

Parviainen, J., and J. Aromaa. 2017. Bodily knowledge beyond motor skills and physical fitness: A phenomenological description of knowledge formation in physical training. Sport, Education and Society 22 (4): 477–492. https://doi.org/10.1080/13573322.2015.1054273

Parviainen, J., and A. Koski. 2023. ‘In the future, as robots become more widespread’: A phenomenological approach to imaginary technologies in healthcare organisations. In The Oxford Handbook of Phenomenologies and Organization Studies, ed. F.X. De Vaujany, J. Aroles and M. Perézts, 277–296. Oxford: Oxford University Press.

Perron, A., Rudge, T., and M. Gagnon. 2020. Hypervisible nurses: Effects of circulating ignorance and knowledge on acts of whistleblowing in health. Advances in Nursing Science 43 (2): 114–131. https://doi.org/10.1097/ANS.0000000000000311

Piras, E.M., and F. Miele. 2019. On digital intimacy: Redefining provider–patient relationships in remote monitoring. Sociology of Health & Illness 41: 116–131. https://doi.org/10.1111/1467-9566.12947

Pulido, C.M., Ruiz-Eugenio, L., Redondo-Sama, G., and B. Villarejo-Carballido. 2020. A new application of social impact in social media for overcoming fake news in health. International Journal of Environmental Research and Public Health 17 (7): 2430. https://doi.org/10.3390/ijerph17072430

Ratzan, S.C., Sommariva, S., and L. Rauh. 2020. Enhancing global health communication during a crisis: Lessons from the COVID-19 pandemic. Public Health Research & Practice 30 (2): 3022010. https://doi.org/10.17061/phrp3022010

Rayner, S. 2012. Uncomfortable knowledge: The social construction of ignorance in science and environmental policy discourses. Economy and Society 41 (1): 107–125. https://doi.org/10.1080/03085147.2011.637335

Roberts, J. 2013. Organizational ignorance: Towards a managerial perspective on the unknown. Management Learning 44 (3): 215–236. https://doi.org/10.1177/1350507612443208

Rodgers, K., and N. Massac. 2020. Misinformation: A threat to the public’s health and the public health system. Journal of Public Health Management and Practice 26 (3): 294–296. https://doi.org/10.1097/PHH.0000000000001163

Rosendal, M., Olde Hartman, T.C., Aamland, A., Van Der Horst, H., Lucassen, P., Budtz-Lilly, A., and C. Burton. 2017. “Medically unexplained” symptoms and symptom disorders in primary care: Prognosis-based recognition and classification. BMC Family Practice 18: 18. https://doi.org/10.1186/s12875-017-0592-6

Ruan, B., Yilmaz, Y., Lu, D., Lee, M., and T.M. Chan. 2020. Defining the digital self: A qualitative study to explore the digital component of professional identity in the health professions. Journal of Medical Internet Research 22 (9): e21416. https://doi.org/10.2196/21416

Sendra, A., and J. Farré. 2017. Institutional pain communication via Twitter by Spanish and US pain societies: Analysis of levels of use and engagement. Catalan Journal of Communication & Cultural Studies 9 (1): 3–23. https://doi.org/10.1386/cjcs.9.1.3_1

Sendra, A., and J. Farré. 2020. Communicating the experience of chronic pain through social media: Patients’ narrative practices on Instagram. Journal of Communication in Healthcare 13 (1): 46–54. https://doi.org/10.1080/17538068.2020.1752982

Sendra, A., Farré, J., and R.W. Vaagan. 2020. Seeking, sharing and co-creating: A systematic review of the relation between social support theory, social media use and chronic diseases. Social Theory & Health 18 (4): 317–339. https://doi.org/10.1057/s41285-019-00106-z

Sismondo, S. 2020. Sociotechnical imaginaries: An accidental themed issue. Social Studies of Science 50 (4): 505–507. https://doi.org/10.1177/0306312720944753

Sosnowy, C. 2014. Practicing patienthood online: Social media, chronic illness, and lay expertise. Societies 4 (2): 316–329. https://doi.org/10.3390/soc4020316

Stein, F. 2020. Blinded by the slide show: Ignorance and the commodification of expertise. Critique of Anthropology 40 (4): 420–437. https://doi.org/10.1177/0308275X20959409

Tempini, N., and L. Del Savio. 2019. Digital orphans: Data closure and openness in patient-powered networks. BioSocieties 14 (2): 205–227. https://doi.org/10.1057/s41292-018-0125-0

Timmermann, C. 2020. Epistemic ignorance, poverty and the COVID-19 pandemic. Asian Bioethics Review 12 (4): 519–527. https://doi.org/10.1007/s41649-020-00140-4

Tjora, A.H., and G. Scambler. 2009. Square pegs in round holes: Information systems, hospitals and the significance of contextual awareness. Social Science & Medicine 68 (3): 519–525. https://doi.org/10.1016/j.socscimed.2008.11.005

Torkkola, S., Vuolanto, P., and J. Parviainen. 2019. Social media and professional communication in the health care organization. NordMedia 2019: Communication, Creativity & Imagination – Challenging the Field, 21–23 August, Malmö.

Usher, N., and Y.M.M. Ng. 2020. Sharing knowledge and “Microbubbles”: Epistemic communities and insularity in US political journalism. Social Media + Society 6 (2): 205630512092663. https://doi.org/10.1177/2056305120926639

Van Dijck, J., and D. Alinead. 2020. Social media and trust in scientific expertise: Debating the COVID-19 pandemic in the Netherlands. Social Media + Society 6 (4). https://doi.org/10.1177/2056305120981057

Ventola, C.L. 2014. Social media and health care professionals: Benefits, risks, and best practices. Pharmacy and Therapeutics 39 (7): 491–520. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103576/

Versteeg, W., Te Molder, H., and P. Sneijder. 2018. “Listen to your body”: Participants’ alternative to science in online health discussions. Health 22 (5): 432–450. https://doi.org/10.1177/1363459317695632

Wagner, A., Polak, P., and M. ?wi?tkiewicz-Mo?ny. 2019. Who defines – Who decides? Theorising the epistemic communities, communities of practice and interest groups in the healthcare field: A discursive approach. Social Theory & Health 17 (2): 192–212. https://doi.org/10.1057/s41285-018-0073-6

Wagner, A., Polak, P., and M. ?wi?tkiewicz-Mo?ny. 2021. From community of practice to epistemic community – Law, discipline and security in the battle for the legalisation of medical cannabis in Poland. Sociology of Health & Illness 43 (2): 316–335. https://doi.org/10.1111/1467-9566.13217

Wehling, P. 2015. Fighting a losing battle? The right not to know and the dynamics of biomedical knowledge production. In Routledge international handbook of ignorance studies, ed. M. Gross and L. McGoey, 206–214. London and New York: Routledge.

Whooley, O., and K.K. Barker. 2021. Uncertain and under quarantine: Toward a sociology of medical ignorance. Journal of Health and Social Behavior 62 (3): 271–285. https://doi.org/10.1177/00221465211009202

Wilkesmann, M. 2016. Ignorance management in hospitals. VINE Journal of Information and Knowledge Management Systems 46 (4): 430–449. https://doi.org/10.1108/VJIKMS-08-2016-0046

Will, C.M. 2020. The problem and the productivity of ignorance: Public health campaigns on antibiotic stewardship. The Sociological Review 68 (1): 55–76. https://doi.org/10.1177/0038026119887330

Williams, D. 2021a. Motivated ignorance, rationality, and democratic politics. Synthese 198: 7807–7827. https://doi.org/10.1007/s11229-020-02549-8

Williams, D. 2021b. To communicate scientific research, we need to confront motivated ignorance. LSE Impact Blog. https://blogs.lse.ac.uk/impactofsocialsciences/2021/01/13/to-communicate-scientific-research-we-need-to-confront-motivated-ignorance/. Accessed 21 June 2021.

Wright, K.B. 2016. Communication in health-related online social support groups/communities: A review of research on predictors of participation, applications of social support theory, and health outcomes. Review of Communication Research 4: 65–87. https://doi.org/10.12840/issn.2255-4165.2016.04.01.010

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2023-04-12

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