Abstract
BackgroundAlthough 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.ObjectiveThis study aims to explore the intentions and concerns of health care consumers regarding the adoption of blockchain-based personal health records and data sharing.MethodsThree 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.ResultsParticipants 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.ConclusionsHealth 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.
Highlights
Researchers have suggested that blockchain technology may precipitate a paradigm shift in personal health records (PHRs) [1,2,3,4]
Multimedia Appendix 2 displays how each participant in the 3 focus groups responded to each question, including the indication of agreement, indication of dissent, ambivalent response, no response, and response given with an elaboration
We investigated how health care consumers responded to the idea of blockchain-based PHRs and health data sharing through a focus group study with 26 individuals
Summary
Researchers have suggested that blockchain technology may precipitate a paradigm shift in personal health records (PHRs) [1,2,3,4]. 1 (page number not for citation purposes) organizations continue to be the key controllers of health records despite the intention to engage consumers in managing health care information [6,7,8] In other words, it is physicians and health administrators rather than consumers or patients that determine the usage and distribution of health data. It is physicians and health administrators rather than consumers or patients that determine the usage and distribution of health data Such systems expose consumers to the “single point of failure” of traditional database technologies, in which the information of numerous patients could be lost or altered if the central database is attacked. Very little is known about health care consumers’ intentions to adopt the applications
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