Designing for Trust in Healthcare Data Sharing

Abstract

Trust is a crucial factor in multi-actor data-sharing initiatives, particularly in sensitive domains like healthcare, where patient privacy, regulatory requirements, and organizational collaboration intersect. However, achieving trust-by-design, creating trust through intentional design choices, is challenging. To address this challenge, this paper investigates how trust frameworks in healthcare data-sharing are designed and how they evolve over time. Central to this inquiry is the conceptualization of “trust anchors”– designable components that provide a foundation for creating trust. Drawing on Technological Innovative Systems theory, this research qualitatively examines two healthcare trust frameworks, each at different lifecycle stages. The case studies reveal how trust anchors contribute to both the development and active management of trust frameworks. The contribution includes a lifecycle approach for trust frameworks and a matrix for categorizing trust anchors, providing guidance for organizations aiming to implement and maintain multi-actor data-sharing frameworks. We find that enforceable trust anchors are more important in the mature phase of a trust frameworks, while in the growing phase, less designable and enforceable trust factors assume a greater role.