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Silent Data, Active Patients

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Human-Centric Computing in a Data-Driven Society (HCC 2020)

Abstract

With the wake of digital welfare, governments advocate that patients play an active role in managing their own illnesses. This active role is sustained by access to and use of health data provided by health care authorities through new digital technologies. Stepping into an empirical site where patients log in to their own site, ‘MyChart’, we inquire their practices reading health care data and their imaginaries about active involvement in their own health care. With this, our analysis focuses on the active patient and aims to bring forth local imaginaries in an effort to nuance data imaginaries located in political strategies, which relate data access with active partnerships. Within this, we illustrate how patients are active, while data is silent and in need of work before it vocals meaningful for the patients.

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Notes

  1. 1.

    p. 5.

  2. 2.

    p. 22.

  3. 3.

    While not the focus of this study, clinicians might also be implicated actors, since patients’ increased access to their record and new forms of consultations are likely to change current work practices (see [18]).

  4. 4.

    p. 188.

  5. 5.

    All patients appear with fictitious names to protect their privacy.

  6. 6.

    This is the term our participants use for performing searches in Google’s search engine, why we maintain this phrasing.

  7. 7.

    Fieldwork 13.04.18.

  8. 8.

    p. 345.

  9. 9.

    p. 154.

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Acknowledgement

We are thankful to the participants of this study: the patients, physicians, secretaries, and nurses who have opened their homes and workplaces and wanted to share and explain about encounters with this new data infrastructure. We also wish to extend thanks to the two anonymous HCC reviewers.

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Correspondence to Cæcilie Sloth Laursen .

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Laursen, C.S., Finken, S. (2020). Silent Data, Active Patients. In: Kreps, D., Komukai, T., Gopal, T.V., Ishii, K. (eds) Human-Centric Computing in a Data-Driven Society. HCC 2020. IFIP Advances in Information and Communication Technology, vol 590. Springer, Cham. https://doi.org/10.1007/978-3-030-62803-1_31

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  • DOI: https://doi.org/10.1007/978-3-030-62803-1_31

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