Data sharing decisions: Perceptions and intentions in healthcare

Abstract

Abstract This article aimed to capture and understand individual's intentions to share data, focusing on data individuals perceive as most sensitive: healthcare data. The study reviews literature related to the decision‐making process with regard to sharing personal data. The context is the UK National Health Service, and measures from literature are used to analyze individual's intention to share healthcare data. A scale is developed and applied to evaluate the decision to share healthcare data. Measurement constructs include intention to disclose, perceived protection, benefits, risk, subjective norms, and perception of use. Analysis draws on data from 129 survey respondents. Though numerous measurements are reported in literature and used in this study, two predictors dominate intention to disclose healthcare data: perceived information risk (PIR) and perceived societal benefit (PSB), and both are significant. PIR contributes negatively, whereas PSB contributes positively to predict intention. For personal healthcare, the privacy paradox applies as though risk may outweigh benefit people rarely opt out of data sharing. Individuals consciously or unconsciously consider their perception of the risk and broader benefits of data sharing. Both risk and benefit are both significant and important; perceived risk carries more weight than perceived benefits. Organizations need to develop campaigns to very clearly explain risks and benefits of personal data sharing to ensure that individuals can make truly informed decisions.