University of Oulu

Grundstrom, C., Korhonen, O., Väyrynen, K., & Isomursu, M. (2020). Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study. JMIR Medical Informatics, 8(3), e16102.

Insurance customers’ expectations for sharing health data : qualitative survey study

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Author: Grundstrom, Casandra1; Korhonen, Olli1; Väyrynen, Karin1;
Organizations: 1Faculty of Information Technology and Electrical Engineering, University of Oulu, Oulu, Finland
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.1 MB)
Persistent link:
Language: English
Published: JMIR Publications, 2020
Publish Date: 2020-05-13


Background: Insurance organizations are essential stakeholders in health care ecosystems. For addressing future health care needs, insurance companies require access to health data to deliver preventative and proactive digital health services to customers. However, extant research is limited in examining the conditions that incentivize health data sharing.

Objective: This study aimed to (1) identify the expectations of insurance customers when sharing health data, (2) determine the perceived intrinsic value of health data, and (3) explore the conditions that aid in incentivizing health data sharing in the relationship between an insurance organization and its customer.

Methods: A Web-based survey was distributed to randomly selected customers from a Finnish insurance organization through email. A single open-text answer was used for a qualitative data analysis through inductive coding, followed by a thematic analysis. Furthermore, the 4 constructs of commitment, power, reciprocity, and trust from the social exchange theory (SET) were applied as a framework.

Results: From the 5000 customers invited to participate, we received 452 surveys (response rate: 9.0%). Customer characteristics were found to reflect customer demographics. Of the 452 surveys, 48 (10.6%) open-text responses were skipped by the customer, 57 (12.6%) customers had no expectations from sharing health data, and 44 (9.7%) customers preferred to abstain from a data sharing relationship. Using the SET framework, we found that customers expected different conditions to be fulfilled by their insurance provider based on the commitment, power, reciprocity, and trust constructs. Of the 452 customers who completed the surveys, 64 (14.2%) customers required that the insurance organization meets their data treatment expectations (commitment). Overall, 4.9% (22/452) of customers were concerned about their health data being used against them to profile their health, to increase insurance prices, or to deny health insurance claims (power). A total of 28.5% (129/452) of customers expected some form of benefit, such as personalized digital health services, and 29.9% (135/452) of customers expected finance-related compensation (reciprocity). Furthermore, 7.5% (34/452) of customers expected some form of empathy from the insurance organization through enhanced transparency or an emotional connection (trust).

Conclusions: To aid in the design and development of digital health services, insurance organizations need to address the customers’ expectations when sharing their health data. We established the expectations of customers in the social exchange of health data and explored the perceived values of data as intangible goods. Actions by the insurance organization should aim to increase trust through a culture of transparency, commitment to treat health data in a prescribed manner, provide reciprocal benefits through digital health services that customers deem valuable, and assuage fears of health data being used to prevent providing insurance coverage or increase costs.

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Series: JMIR medical informatics
ISSN: 2291-9694
ISSN-E: 2291-9694
ISSN-L: 2291-9694
Volume: 8
Issue: 3
Article number: e16102
DOI: 10.2196/16102
Type of Publication: A1 Journal article – refereed
Field of Science: 113 Computer and information sciences
Funding: CG gratefully acknowledges the financial support from grant number 676201 for the Connected Health Early Stage Researcher Support System from the Horizon 2020 Framework Programme of the European Commission.
EU Grant Number: (676201) CHESS - Connected Health Early Stage Researcher Support System
Copyright information: © Casandra Grundstrom, Olli Korhonen, Karin Väyrynen, Minna Isomursu. Originally published in JMIR Medical Informatics (, 26.03.2020. 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 JMIR Medical Informatics, 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.