University of Oulu

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

Personal health data : access and perceived value in Denmark

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Author: Karampela, M.1; Grundstrom, C.2; Isomursu, M.1,2
Organizations: 1Digital Department, IT-University of Copenhagen, Rued Langgaards Vej 7, DK-2300 Copenhagen S, Denmark
2Interact Group, University of Oulu P.O. Box 8000, Finland
Format: article
Version: accepted version
Access: open
Online Access: PDF Full Text (PDF, 0.3 MB)
Persistent link: http://urn.fi/urn:nbn:fi-fe2019090927420
Language: English
Published: Institute of Electrical and Electronics Engineers, 2018
Publish Date: 2019-09-09
Description:

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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Series: Annual International Conference of the IEEE Engineering in Medicine and Biology Society
ISSN: 2375-7477
ISSN-E: 1557-170X
ISSN-L: 2375-7477
ISBN: 978-1-5386-3646-6
ISBN Print: 978-1-5386-3647-3
Pages: 4081 - 4084
DOI: 10.1109/EMBC.2018.8513407
OADOI: https://oadoi.org/10.1109/EMBC.2018.8513407
Host publication: 2018 40th Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC)
Conference: Annual International Conference of the IEEE Engineering in Medicine and Biology Society
Type of Publication: A4 Article in conference proceedings
Field of Science: 113 Computer and information sciences
Subjects:
Funding: C.G. Author has received funding from the European Union’s Horizon 2020 research and innovation programme - Marie Sklodowska-Curie Actions grant agreement no. 676201 - CHESS - Connected Health Early Stage Researcher Support.
EU Grant Number: (676201) CHESS - Connected Health Early Stage Researcher Support System
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