Perspectives of Patients, Health Care Professionals, and Developers Toward Blockchain-Based Health Information Exchange: Qualitative Study

Abstract

Background Although the electronic health record system adoption rate has reached 96% in the United States, implementation and usage of health information exchange (HIE) is still lagging behind. Blockchain has come into the spotlight as a technology to solve this problem. However, there have been no studies assessing the perspectives of different stakeholders regarding blockchain-based patient-centered HIE. Objective The objective of this study was to analyze the awareness among patients, health care professionals, and information technology developers toward blockchain-based HIE, and compare their different perspectives related to the platform using a qualitative research methodology. Methods In this qualitative study, we applied grounded theory and the Promoting Action on Research Implementation in the Health Service (PARiHS) framework. We interviewed 7 patients, 7 physicians, and 7 developers, for a total of 21 interviewees. Results Regarding the leakage of health information, the patient group did not have concerns in contrast to the physician and developer groups. Physicians were particularly concerned about the fact that errors in the data cannot be easily fixed due to the nature of blockchain technology. Patients were not against the idea of providing information for clinical trials or research institutions. They wished to be provided with the results of clinical research rather than being compensated for providing data. The developers emphasized that blockchain must be technically mature before it can be applied to the health care scene, and standards of medical information to be exchanged must first be established. Conclusions The three groups’ perceptions of blockchain were generally positive about the idea of patients having the control of sharing their own health information. However, they were skeptical about the cooperation among various institutions and implementation for data standardization in the establishment process, in addition to how the service will be employed in practice. Taking these factors into consideration during planning, development, and operation of a platform will contribute to establishing practical treatment plans and tracking in a more convenient manner for both patients and physicians. Furthermore, it will help expand the related research and health management industry based on blockchain.

Benefits and concerns associated with blockchain-based health information exchange (HIE): a qualitative study from physicians' perspectives

“…Questions on context focus on current issues with HIE efforts and physicians' attitudes about the use of blockchain in healthcare settings. Finally, questions on facilitation cover perceived benefits, risks, and suggestions for the successful rollout of blockchain-based platforms for information sharing in healthcare [ 21 ]. As the purpose of this study was to characterize physicians' expectations, attitudes, and experiences to help develop a blockchain-enabled HIE, using the PARIHS framework can be helpful to apply the knowledge into practice.…”

Blockchain Technology Implementation for Medical Data Management in Malaysia: Potential, Need and Challenges

“…This is where the Malaysian healthcare industry is standing now. In Blockchain EHR, patients cannot alter their medical data but can access and decide to whom the information is to be shared [24], [25].…”

Clinical, Organizational and Regulatory, and Ethical and Social

“…35 This is particularly true for blockchain where most people might have not heard of it, especially on how it can be used for healthcare. 36 For one expert, there is a need for developers and implementers to explain how blockchain stores and protects data to demonstrate transparency: "[Sharing a perspective of a potential user of Me-diLinker] I might be a slow adopter in some ways because I'm concerned about where my original data that I'm going to share actually lives. I'm not comfortable with my credit card being on here [Me-diLinker] and doing this."…”