From intention to action: The factors affecting health data sharing intention and action

Abstract

Introduction: Effective prevention and treatment of diseases requires utilization of health-related lifestyle data, which has thus become increasingly important. According to some studies, participants were willing to share their health data for use in medical care and research. Although intention does not always accurately reflect action, few studies have examined the question of whether data-sharing intention leads to data-sharing action.

Objective: The aim of this study was to examine the extent of actualizing data-sharing intention to data-sharing action and to identify the factors that influence data-sharing intention and action.

Methods: A web-based survey of members of a university examined the data-sharing intention and issues of concern when making decisions on data sharing. The participants were asked to deposit their armband data for use in research at the end of the survey. A comparison of data-sharing intention and action in relation to the participants' characteristics was performed. Factors having a significant effect on data-sharing intention and action were identified using logistic regressions.

Results: Of 386 participants, 294 expressed willingness to share health data. However, only 73 participants deposited their armband data. The primary reason for refusal to deposit armband data was the inconvenience of the data transfer process (56.3%). Appropriate compensation had a significant effect on data-sharing intention (OR: 3.3, CI: 1.86-5.75) and action (OR: 2.8, CI: 1.14-8.21). The compensation for data sharing (OR:2.8, CI:1.14-8.21) and familiarity with data (OR:3.1, CI:1.36-8.21) were significant predictors of data sharing action, however, data-sharing intention was not (OR: 1.5, CI:0.65-3.72).

Conclusion: Despite expressing willingness to share their health data, the participants' intention was not actualized to data-sharing behavior for depositing armband data. Implementation of a streamlined data transfer process and providing appropriate compensation might facilitate data-sharing. These findings could be useful in development of strategies to facilitate sharing and reuse of health data.

Keywords: Data privacy; Data sharing action; Data sharing intention; Health data sharing; Wearable health data.