Personal health data : access and perceived value in Denmark
Karampela, M.; Grundstrom, C.; Isomursu, M. (2018-10-29)
M. Karampela, C. Grundstrom and M. Isomursu, "Personal Health Data: Access and Perceived Value in Denmark," 2018 40th Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC), Honolulu, HI, 2018, pp. 4081-4084. doi: 10.1109/EMBC.2018.8513407
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https://urn.fi/URN:NBN:fi-fe2019090927420
Tiivistelmä
Abstract
This study explores how accessible and valuable Personal Health Data are in Denmark. This paper uses a qualitative inquiry which was adopted to provide information about (1) the accessibility of data available, (2) and the perceived value of data by recruiting 8 healthy Danish individuals who were instructed to access their personal health data, and were then prompted to discuss how accessible and valuable they perceived their personal health data to be. In total, participants accessed 31 datasets and wearable sensor data through 23 web applications and 8 mobile applications. They reported on search and access challenges in interviews and through journaling. Our results suggest that participants were satisfied with the access they had to their personal health data, however the participants expressed disappointment in ways the data was presented for them by the services and platforms. Thus, we concluded that the perceived value of personal data were found to be dependent on the usability and personalization features of the services, rather than on the data itself.
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