Ethical Implementation of the Learning Healthcare System with Blockchain Technology

Blockchain in Healthcare Today, Forthcoming

9 Pages Posted: 29 May 2019

See all articles by Marielle S. Gross

Marielle S. Gross

Johns Hopkins Berman Institute of Bioethics

Robert C. Miller, Jr.

ConsenSys Health

Date Written: April 10, 2019

Abstract

Introduction: A learning healthcare system (LHCS), the paradigm in which healthcare organization and delivery continuously maximizes and seamlessly incorporates new knowledge, has yet to be attained. In the ethical framework proposed for the LHCS, all healthcare stakeholders are responsible for contributing to learning, including patients, who would primarily fulfill this obligation by allowing their health data to be used for research. While patients will ultimately benefit from a LHCS, requiring individuals to give up some rights to control and privacy of their health data before reciprocal benefits are established is a critical barrier to implementation, particularly given erosion of public trust from increasingly common health data breaches and scandals.

Objective: We propose that blockchain technology complemented by secure computation methods can foster implementation of a LHCS by minimizing upfront patient-facing compromises with unsurpassed data security and privacy, and by optimizing the system’s fulfillment of its obligations to respect patients through transparency, engagement, and accountability.

Findings: We demonstrate how a blockchain-enabled LHCS could foster patient willingness to contribute to learning by providing desired security and control over health data. Also, secure computation methods could enable meta-analysis without exposing individual-level data, thus allowing the system to protect patients’ privacy while simultaneously learning from their data. The transparency and immutability of blockchain ledgers would also support the public’s trust in the system by allowing patients to audit and oversee which of their data are used, how they are used, and by whom. Further, blockchain communities are community-governed peer-to-peer networks in which sharing builds mutually beneficial value, offering a model for engaging patients as LHCS stakeholders. Lastly, smart contracts could be used to ensure accountability of the system by embedding feedback mechanisms by which patients directly and automatically realize benefits of sharing their data.

Discussion: Blockchain technology united with secure computational methods represents an opportunity to overcome ethical barriers to transitioning to a LHCS via enhanced security, privacy and transparency for health data and capacity to optimize patient engagement and accountability. We close with limitations of current blockchain technology and next steps.

Keywords: blockchain technology, bioethics, learning healthcare system, ethical framework, ethics and technology, health data, privacy, security, control, accountability, transparency, engagement

Suggested Citation

Gross, Marielle S. and Miller, Jr., Robert, Ethical Implementation of the Learning Healthcare System with Blockchain Technology (April 10, 2019). Blockchain in Healthcare Today, Forthcoming. Available at SSRN: https://ssrn.com/abstract=3391034 or http://dx.doi.org/10.2139/ssrn.3391034

Marielle S. Gross (Contact Author)

Johns Hopkins Berman Institute of Bioethics ( email )

1809 Ashland Ave.
Baltimore, MD 21205
United States

Robert Miller, Jr.

ConsenSys Health ( email )

New York, NY
United States

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