Privacy Personas for IoT-Based Health Research: A Privacy Calculus Approach

Abstract

The reliance on data donation from citizens as a driver for research, known as citizen science, has accelerated during the Sars-Cov-2 pandemic. An important enabler of this is Internet of Things (IoT) devices, such as mobile phones and wearable devices, that allow continuous data collection and convenient sharing. However, potentially sensitive health data raises privacy and security concerns for citizens, which research institutions and industries must consider. In e-commerce or social network studies of citizen science, a privacy calculus related to user perceptions is commonly developed, capturing the information disclosure intent of the participants. In this study, we develop a privacy calculus model adapted for IoT-based health research using citizen science for user engagement and data collection. Based on an online survey with 85 participants, we make use of the privacy calculus to analyse the respondents' perceptions. The emerging privacy personas are clustered and compared with previous research, resulting in three distinct personas which can be used by designers and technologists who are responsible for developing suitable forms of data collection. These are the 1) Citizen Science Optimist, the 2) Selective Data Donor, and the 3) Health Data Controller. Together with our privacy calculus for citizen science based digital health research, the three privacy personas are the main contributions of this study.