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.
Highlights
One way for obtaining data at scale in research is to involve citizens in the research through the voluntary engagement of citizens in scientific inquiry, known as citizen science
Internet of Things (IoT) devices including mobile phones, which come equipped with all sorts of sensors and powerful cameras as well as connected devices like wearables, fitness trackers, and medical sensors have made this type of research feasible and desirable [2]
We report on a survey of privacy, trust, and data access concerns associated with conducting citizen science based health research using IoT technology
Summary
One way for obtaining data at scale in research is to involve citizens in the research through the voluntary engagement of citizens in scientific inquiry, known as citizen science In these initiatives, citizens act as data donors, who can be nowadays supported by digital technologies to aid scalability [1]. Internet of Things (IoT) devices including mobile phones, which come equipped with all sorts of sensors and powerful cameras as well as connected devices like wearables, fitness trackers, and medical sensors have made this type of research feasible and desirable [2] These devices produce extensive, longitudinal data about our bodies (e.g., physical activity, heart rate, weight, blood oxygen saturation) and lives (e.g., social activities, use of home appliances, sleeping habits) that can be harvested for medical research [3]. Participants between 18 and 28 years did not claim further privacy protection and were somewhat satisfied with the apps they were using [22]
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