Consumers’ Intentions to Adopt Blockchain-Based Personal Health Records and Data Sharing: Focus Group Study


Chang Lu, Hoda Hamouda, Consumers’ Intentions to Adopt Blockchain-Based Personal Health Records and Data Sharing: Focus Group Study, Victoria Lemieux

Date of Publication


Background: Although researchers are giving increased attention to blockchain-based personal health records (PHRs) and data sharing, the majority of research focuses on technical design. Very little is known about health care consumers’ intentions to adopt the applications.

Objective: This study aims to explore the intentions and concerns of health care consumers regarding the adoption of blockchain-based personal health records and data sharing.

Methods: Three focus groups were conducted, in which 26 participants were shown a prototype of a user interface for a self-sovereign blockchain-based PHR system (ie, a system in which the individual owns, has custody of, and controls access to their personal health information) to be used for privacy and secure health data sharing. A microinterlocutor analysis of focus group transcriptions was performed to show a descriptive overview of participant responses. NVivo 12.0 was used to code the categories of the responses.

Results: Participants did not exhibit a substantial increase in their willingness to become owners of health data and share the data with third parties after the blockchain solution was introduced. Participants were concerned about the risks of losing private keys, the resulting difficulty in accessing care, and the irrevocability of data access on blockchain. They did, however, favor a blockchain-based PHR that incorporates a private key recovery system and offers a health wallet hosted by government or other positively perceived organizations. They were more inclined to share data via blockchain if the third party used the data for collective good and offered participants nonmonetary forms of compensation and if the access could be revoked from the third party.

Conclusions: Health care consumers were not strongly inclined to adopt blockchain-based PHRs and health data sharing. However, their intentions may increase when the concerns and recommendations demonstrated in this study are considered in application design.

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We acknowledge that the UBC Point Grey campus is situated on the traditional, ancestral, and unceded territory of the xʷməθkʷəy̓əm.

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