Blockchain innovation for consent self-management in health information exchanges

• Published in: Decision Support Systems 2023-11, Vol.174, p.114021, Article 114021
• Main Authors: Anderson, Chad, Carvalho, Arthur, Kaul, Mala, Merhout, Jeffrey W.
• Format: Article
• Language: English
• Subjects: Blockchain; Design science research; Health information exchange; Patient consent; Protected health information; Trust
• ISSN: 0167-9236
• DOI: 10.1016/j.dss.2023.114021

With the increasing digitalization of health data, patients need to make informed decisions about the online sharing of their protected health information. This necessitates a robust technical infrastructure that enables patients to self-manage consent and the trusted exchange of this information across sharing entities. Unfortunately, current health information exchange systems in the U.S. are limited in both these regards. While there is recent work on digital patient consent management, there is limited work that provides effective solutions for patient self-management of consent. Further, interoperability issues in the way health information exchanges are currently architected and differences in regulations across localities exacerbate the challenges of consent management. In this research, we survey potential patients' willingness to self-manage healthcare-related consent. Having established the desire for consent self-management, we propose a solution that enables the seamless sharing of patient consent across different healthcare providers and health information exchanges. Specifically, we use a rigorous design science approach to create a blockchain-based, self-managed patient consent system and we evaluate the design through an instantiated prototype. The results of our study should be useful to researchers in healthcare information management as well as to practitioners designing consent management systems. Our research contributes to design science research with an innovative, rigorously evaluated, design principles-based artifact that addresses a critical problem of sharing protected health information. •Most patients would prefer to self-manage their consent for health information exchange.•Health information exchange in the U.S. is decentralized and not fully interoperable.•Blockchain can support consent self-management in a decentralized environment.•Using a design science research approach, we design a consent self-management app.