Accepted for/Published in: JMIR Formative Research
Date Submitted: Jun 30, 2020
Date Accepted: Oct 26, 2020
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Blockchain-based Personal Health Records and Health Data Sharing: Are Patients Ready?
ABSTRACT
Background:
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.
Objective:
This study aims to show patients’ attitudes towards blockchain-based personal health record (PHR) and health data sharing and provide user-centered design recommendations.
Methods:
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.
Results:
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.
Conclusions:
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. Clinical Trial: Not applicable.
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