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.
While Blockchain has emerged as a new technology to support personal health record (PHR) and health care data sharing, and scholars and experts have explored the technical design of blockchain application, very little is known about patient attitude towards blockchain-based PHR and health care data sharing. This study aims to show patients’ attitudes towards blockchain-based personal health record (PHR) and health data sharing and provide user-centered design recommendations. Three focus groups were conducted. Twenty-six participants were shown a prototype of a user interface for a “self-sovereign” blockchain-based PHR system (i.e., system in which the individual owns, has custody of and controls access to their personal health information) to be used for privacy-preserving and secure health data sharing. Micro-interlocutor 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. Participants did not exhibit a significant increase in their willingness to become the owner 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 to access care, and the irrevocability of data access on blockchain. They would, 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 organization. They would be more inclined to share data via blockchain if the third party uses the data for collective good and offers them non-monetary forms of compensation, and if the access can be revoked from the third party. Patients are not yet fully ready for blockchain-based PHR and health data sharing. However, incorporating the recommendations of this study may increase their willingness. Not applicable.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2025 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.