University of Oulu

Karampela, M., Ouhbi, S., & Isomursu, M. (2019). Connected Health User Willingness to Share Personal Health Data: Questionnaire Study. Journal of Medical Internet Research, 21(11), e14537.

Connected health user willingness to share personal health data : questionnaire study

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Author: Karampela, Maria1; Ouhbi, Sofia2; Isomursu, Minna3
Organizations: 1IT University of Copenhagen, Copenhagen S, Denmark
2United Arab Emirates University, Al Ain, United Arab Emirates
3University of Oulu, Oulu, Finland
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.7 MB)
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Language: English
Published: JMIR Publications, 2019
Publish Date: 2020-02-28


Background: Connected health has created opportunities for leveraging health data to deliver preventive and personalized health care services. The increasing number of personal devices and advances in measurement technologies contribute to an exponential growth in digital health data. The practices for sharing data across the health ecosystem are evolving as there are more opportunities for using such data to deliver responsive health services.

Objective: The objective of this study was to explore user attitudes toward sharing personal health data (PHD). The study was executed within the first year after the implementation of the new General Data Protection Regulation (GDPR) legal framework.

Methods: The authors analyzed the results of an online questionnaire survey to explore the willingness of 8004 people using connected health services across four European countries to share their PHD and the conditions under which they would be willing to do so.

Results: Our findings indicate that the majority of users are willing to share their personal PHD for scientific research (1811/8004, 22.63%). Age, education level, and occupation of the participants, in addition to the level of digitalization in their country were found to be associated with data sharing attitudes.

Conclusions: Positive attitudes toward data sharing for scientific research can be perceived as an indication of trust established between users and academia. Nevertheless, the interpretation of data sharing attitudes is a complex process, related to and influenced by various factors.

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Series: Journal of medical internet research
ISSN: 1439-4456
ISSN-E: 1438-8871
ISSN-L: 1439-4456
Volume: 21
Issue: 11
Article number: e14537
DOI: 10.2196/14537
Type of Publication: A1 Journal article – refereed
Field of Science: 113 Computer and information sciences
Funding: This article is based upon work from COST Action ENJECT TD 1405, supported by COST (European Cooperation in Science and Technology; We would like to thank Sitra Innovation Fund for providing us with the data.
Copyright information: ©Maria Karampela, Sofia Ouhbi, Minna Isomursu. Originally published in the Journal of Medical Internet Research (, 16.11.2019. This is an open-access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on, as well as this copyright and license information must be included.