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oapen-20.500.12657-527002022-02-11T02:51:00Z Chapter 7 Lost and Found Hoeyer, Klaus data sourcing; European healthcare; data flows; public institutions; private institutions; Denmark bic Book Industry Communication::M Medicine bic Book Industry Communication::G Reference, information & interdisciplinary subjects::GP Research & information: general::GPH Data analysis: general Both inside and outside the health services, patients and healthy citizens give rise to increasing amounts of health data. They are created, collected, curated, stored and used for multiple purposes in a process I characterise as intensified data sourcing. This data intensification changes how we deal with health issues. In this chapter I reflect on similarities and differences between data flows mediated by public and private institutions, using Denmark as my primary example. Denmark in interesting ways prescribes a form of solidarity that might be associated with We Medicine: people deliver data in the process of receiving, or in exchange for, publicly financed healthcare; and the data can be used for research for the common good. The solidarity of the model is currently being challenged in various ways, however, as authorities circumvent the voluntariness of participation and begin seeing health data as business opportunities. Simultaneously, a private market in health data is emerging mediated by privately owned platforms. The chapter compares the public and commercial forms of data sourcing to explore what is at stake for individuals and society in those processes. 2022-02-10T10:43:47Z 2022-02-10T10:43:47Z 2018 chapter https://library.oapen.org/handle/20.500.12657/52700 eng application/pdf Attribution 4.0 International Lost_and_Found-Relocating_the_Individual_in_the_Age_of_Intensified_Data_Sourcing_in_European_Healthcare.pdf Cambridge University Press Personalized medicine, individual choice and the common good 10.1017/9781108590600.007 10.1017/9781108590600.007 7607a2d0-47af-490f-9d2a-8c9340266f8a 3941bc2d-9d3d-464e-8212-3c5ad37d822a 178e65b9-dd53-4922-b85c-0aaa74fce079 European Research Council (ERC) 22 682110 POLICYAID H2020 European Research Council H2020 Excellent Science - European Research Council open access
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OAPEN
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English
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Both inside and outside the health services, patients and healthy citizens give rise to increasing amounts of health data. They are created, collected, curated, stored and used for multiple purposes in a process I characterise as intensified data sourcing. This data intensification changes how we deal with health issues. In this chapter I reflect on similarities and differences between data flows mediated by public and private institutions, using Denmark as my primary example. Denmark in interesting ways prescribes a form of solidarity that might be associated with We Medicine: people deliver data in the process of receiving, or in exchange for, publicly financed healthcare; and the data can be used for research for the common good. The solidarity of the model is currently being challenged in various ways, however, as authorities circumvent the voluntariness of participation and begin seeing health data as business opportunities. Simultaneously, a private market in health data is emerging mediated by privately owned platforms. The chapter compares the public and commercial forms of data sourcing to explore what is at stake for individuals and society in those processes.
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title |
Lost_and_Found-Relocating_the_Individual_in_the_Age_of_Intensified_Data_Sourcing_in_European_Healthcare.pdf
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spellingShingle |
Lost_and_Found-Relocating_the_Individual_in_the_Age_of_Intensified_Data_Sourcing_in_European_Healthcare.pdf
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title_short |
Lost_and_Found-Relocating_the_Individual_in_the_Age_of_Intensified_Data_Sourcing_in_European_Healthcare.pdf
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title_full |
Lost_and_Found-Relocating_the_Individual_in_the_Age_of_Intensified_Data_Sourcing_in_European_Healthcare.pdf
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title_fullStr |
Lost_and_Found-Relocating_the_Individual_in_the_Age_of_Intensified_Data_Sourcing_in_European_Healthcare.pdf
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title_full_unstemmed |
Lost_and_Found-Relocating_the_Individual_in_the_Age_of_Intensified_Data_Sourcing_in_European_Healthcare.pdf
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title_sort |
lost_and_found-relocating_the_individual_in_the_age_of_intensified_data_sourcing_in_european_healthcare.pdf
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publisher |
Cambridge University Press
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2022
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1771297634572566528
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