Data sense-making and communicative gaps on sundhed.dk
DOI:
https://doi.org/10.7146/mk.v39i74.132370Keywords:
digital health, data, patient experiences, ambivalence, communication, eHealthAbstract
This paper examines personal experiences of digital health data on the Danish eHealth platform sundhed.dk. Taking a patient’s view, the paper understands data sense-making as an embodied communicative practice. The empirical analysis, consisting of 24 purposefully sampled interviews, is brought together with the conceptual framework describing and unpacking the ambivalences to be found in digital health data experiences into themes of data ambivalence, emotional ambivalence, communicative ambivalence and identity ambivalence. This in-depth empirical description of patients’ ambivalent experiences contributes to a more nuanced understanding of the profound changes digital health data is having on a patients’ everyday lives. In particular, it emphasizes the communicative challenges arising from the constant availability of digital health data anytime, anywhere, and calls for further research into the new and unfamiliar communicative situations in which patients are placed and forced to navigate in.
References
Atasoy, H., Greenwood, B. N., & McCullough, J. S. (2019). The digitization of patient care: A review of the effects of electronic health records on health care quality and utilization. Annual Review of Public Health, 40, 487–500. https://doi.org/10.1146/annurev-publhealth-040218-044206
Barad, K. (2007). Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning (2nd ed.). Duke University Press. https://doi.org/10.2307/j.ctv12101zq
Barello, S., Triberti, S., Graffigna, G., Libreri, C., Serino, S., Hibbard, J., & Riva, G. (2016). eHealth for patient engagement: A systematic review. Frontiers in Psychology, 6, 2013. https://doi.org/10.3389/fpsyg.2015.02013
Bruns, A., & Schmidt, J. H. (2011). Produsage: A closer look at continuing developments. New Review of Hypermedia and Multimedia, 17(1), 3–7. https://doi.org/10.1080/13614568.2011.563626
Buchanan, I. (2020). Assemblage theory and method: An introduction and guide. Bloomsbury Academic. https://doi.org/10.5040/9781350015579
Carey, J. W. (1989). A cultural approach to communication. In J. W. Carey (Ed.), Communication as culture (pp. 13–36). Unwin Hyman.
Carter, S., Green, J., & Thorogood, N. (2013). The domestication of an everyday health technology: A case study of electric toothbrushes. Social Theory & Health, 11(4), 344–367. https://doi.org/10.1057/sth.2013.15
Danmarks Statistik. (2020). It-anvendelse i befolkningen. In Nyt Fra Danmarks Statistik (Nr. 347). Retrieved January 9, 2023, from https://www.dst.dk/nyt/40870 https://doi.org/10.6027/anp2016-759
Deleuze, G., & Guattari, F. (1987). A thousand plateaus: Capitalism and schizophrenia. University of Minnesota Press.
Dumit, J. (2010). A digital image of the category of the person. In J. B. Good, M. M. Fischer, S. S. Willen, & M. D. Good (Eds.), A reader in medical anthropology: Theoretical trajectories, emergent realities (pp. 367–376). Wiley-Blackwell. https://doi.org/10.1111/j.1467-9655.2011.01725_20.x
European Commission. (2022). The digital economy and society index (DESI). Retrieved January 9, 2023, from https://digital-strategy.ec.europa.eu/en/policies/desi
Fisher, B., Bhavnani, V., & Winfield, M. (2009). How patients use access to their full health records: A qualitative study of patients in general practice. Journal of the Royal Society of Medicine, 102(12), 539–544. https://doi.org/10.1258/jrsm.2009.090328
Fisher, B., & Britten, N. (1993). Patient access to records: Expectations of hospital doctors and experiences of cancer patients. The British Journal of General Practice, 43(367), 52–56.
Ghita, C., & Thorén, C. (2021). Going cold turkey! An autoethnographic exploration of digital disengagement. Nordicom Review, 42(S4), 152–167. https://doi.org/10.2478/nor-2021-0047
Hacking, I. (2007). Kinds of people: Moving targets. Proceedings of the British Academy, 151, 285–318. https://doi.org/10.5871/bacad/9780197264249.003.0010
Højgaard, L. (2017). Hvordan får vi verdens bedste sundhedsvæsen? Informations Forlag. https://doi.org/10.7146/tfp.v14i26.104808
Johnson, E. (2019). Posthumanism, materialitet och människa. In G. Erlingsdóttir, & H. Sandberg (Eds.), På tal om e-hälsa (pp. 177–192). Studentlitteratur.
Kreps, G. L., & Neuhauser, L. (2010). New directions in eHealth communication: Opportunities and challenges. Patient Education and Counseling, 78(3), 329–336. https://doi.org/10.1016/j.pec.2010.01.013
Kuckartz, U. (2012). Qualitative inhaltsanalyse: Methoden, praxis, computerunterstützung. Beltz Juventa.
Leeds-Hurwitz, W. (2009). Social interaction theories. In S. A. Littlejohn, & K. A. Foss (Eds.), Encyclopedia of communication theory (Vol. 2) (pp. 279–285). Sage.
Liu, X., Faes, L., Kale, A. U., Wagner, S. K., Fu, D. J., Bruynseels, A., Mahendiran, T., Moraes, G., Shamdas, M., Kern, C., Ledsam, J. R., Schmid, M., Balaskas, K., Topol, E. J., Bachmann, L. M., Keane, P. A., & Denniston, A. K. (2019). A comparison of deep learning performance against health-care professionals in detecting diseases from medical imaging: A systematic review and meta-analysis. The Lancet Digital Health, 1(6), e271–e297. https://doi.org/10.1016/S2589-7500(19)30123-2
Lupton, D. (2016). Towards critical digital health studies: Reflections on two decades of research in health and the way forward. Health, 20(1), 49–61. https://doi.org/10.1177/1363459315611940
Lupton, D. (2017). Feeling your data: Touch and making sense of personal digital data. New Media & Society, 19(10), 1599–1614. https://doi.org/10.1177/1461444817717515
Lupton, D. (2018). How do data come to matter? Living and becoming with personal data. Big Data & Society, 5(2). https://doi.org/10.1177/2053951718786314
Lupton, D. (2020). Data selves: More-than-human perspectives. Polity Press.
Mahnke, M., & Nielsen, M. (2021). eHealth platforms as user–data communication: Examining patients’ struggles with digital health data. Nordicom Review, 42(S4) 45–58. https://doi.org/10.2478/nor-2021-0040
Manteghinejad, A., & Javanmard, S. H. (2021). Challenges and opportunities of digital health in a post-COVID19 world. Journal of Research in Medical Sciences: The Official Journal of Isfahan University of Medical Sciences, 26, 11.
Peters, J. D. (1994). The gaps of which communication is made. Critical Studies in Mass Communication, 11(2), 117–140. https://doi.org/10.1080/15295039409366891
Pink, S., Sumartojo, S., Lupton, D., & Heyes La Bond, C. (2017). Mundane data: The routines, contingencies
and accomplishments of digital living. Big Data & Society, 4(1). https://doi.org/10.1177/2053951717700924
Region Zealand. (2016). Your rights as a patient.
Rose, N., & Abi-Rached, J. M. (2013). Neuro. Princeton University Press.
Strudwick, G., Booth, R. G., McLean, D., Leung, K., Rosetti, S., McCann, M., & Strauss, J. (2020). Identifying indicators of meaningful patient portal use by psychiatric populations. Informatics for Health & Social Care, 45(4), 396–409.
Sundhed.dk. (2023). Sundhed.dk’s strategy (2019–2022). https://www.sundhed.dk/borger/service/om-sundheddk/om-organisationen/hvem-er-sundheddk/sundheddks-strategi-2019-2022/
Svendsen, G. T. (2018). Trust (2nd ed.). Aarhus University Press.
Woods, S., Schwartz, E., Tuepker, A., Press, N., Nazi, K., Turvey, C., & Nichol, W. (2013). Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: Qualitative study. Journal of Medical Internet Research, 15(3), e65. https://doi.org/10.2196/jmir.2356
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