Patient Perceptions of Blockchain-Based Health Information Exchange: User-Centered Design Study

Background: Blockchain-based health information exchange (HIE) has received increased attention in health care research and practice over the last years. It enables the sharing of patient information across healthcare organizations, provides higher levels of data confidentiality and security, and reduces time and costs in collaborative medical decision-making. To make informed decisions on the implementation of blockchain-based HIE in practice and to fully understand the implications of its use for patient care, it is important to gain insights into patient perceptions of and interactions with blockchain-based HIE. Objective: This study aimed to assess patient perceptions of a blockchain-based HIE mobile app to inform its iterative development. Methods: We used a mixed methods user-centered design in 3 phases to iteratively assess patient perceptions of blockchain-based HIE: (1) structured questionnaires collecting patient requirements for blockchain-based HIE, (2) semistructured interviews evaluating mobile app mock-ups, and (3) a survey with blockchain-based HIE scenarios related to their patient care using the technology acceptance model, System Usability Scale, and open feedback. Both the semistructured interviews and the survey were conducted in a clinical setting with patients with cancer undergoing treatment at a major university hospital in Germany. As an exemplary case, we deem patients with cancer as well-positioned to evaluate a blockchain-based HIE mobile app since their treatment requires extensive coordination and data sharing across health care providers. Results: Our findings support that patients have a high intention to use the blockchain-based functions that enable them to define, track, and revoke access to their health data per health care facility and service provider. Patients rated the 4 key functionalities (connection with providers, document sharing, a health diary, and a health care service provider search) as both useful and easy to use. The overall System Usability Scale of the blockchain-based HIE mobile app improved over the 3 phases up to 77.34, showing a good overall usability. The open feedback showed that patients’ perceived usefulness of a blockchain-based HIE mobile app is especially influenced by 3 factors: the acceleration of the process of data sharing, patient-centered access control, and alignment with the respective health care settings. Moreover, patients’ perceived ease of use of a blockchain-based HIE mobile app is impacted by 3 additional factors: the intuitiveness of the interaction, an aesthetic and functional design, and individual differences such as age or literacy with document management systems. Conclusions: The evaluation demonstrates that patients are inclined to use blockchain-based HIE to manage their health data, as it empowers them to control which health care providers or individuals can access their information. To foster the use of a blockchain-based HIE mobile app, the app should allow patients to effortlessly establish connections with health care providers, offer an overview of all patient data, and enable patients to share medical documents individually via the app.