Accessing and Sharing Electronic Personal Health Data

Karampela, Maria; Ouhbi, Sofía; Isomursu, Minna

doi:10.5220/0007247301820189

Cited by 3 publications

(2 citation statements)

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“…The use of personal health data (PHD) can be essential to the evolution of health care systems in general [19] and connected health systems in particular [20]. Sharing health data via connected health solutions can have a positive social impact by promoting social solidarity among patients, a positive economic impact by optimizing health care resources, and a positive environmental impact by reducing the need for transportation [21].…”

Section: Introductionmentioning

confidence: 99%

Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

Karampela¹,

Ouhbi²,

Isomursu³

2019

J Med Internet Res

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BackgroundConnected 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.ObjectiveThe 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.MethodsThe 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.ResultsOur 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.ConclusionsPositive 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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Section: Introductionmentioning

confidence: 99%

Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

Karampela¹,

Ouhbi²,

Isomursu³

2019

J Med Internet Res

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“…In the Nordic countries especially, there is only limited empirical research on customers sharing health data in the private insurance sector [16]. In particular, there is a lack of case study research wherein relevant stakeholders are studied holistically to develop insights into the motivations for and perceptions about sharing health data [17]. Studies that are available indicate similar findings; the majority of individuals are unwilling to share their health data with insurance organizations.…”

Section: Introductionmentioning

confidence: 99%

Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study

Grundstrom¹,

Korhonen²,

Väyrynen³

et al. 2020

JMIR Med Inform

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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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Integrating Users Logic Into Requirements Engineering for Connected Healthcare co-Design

Ouhbi

Karampela

Isomursu

2019

Proceedings of the 14th International Conference on Evaluation of Novel Approaches to Software Engineering

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Accessing and Sharing Electronic Personal Health Data

Cited by 3 publications

References 35 publications

Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study

Integrating Users Logic Into Requirements Engineering for Connected Healthcare co-Design

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