Patient Willingness to Consent to Mobile Phone Data Collection for Mental Health Apps: Structured Questionnaire

Abstract

Background It has become possible to use data from a patient’s mobile phone as an adjunct or alternative to the traditional self-report and interview methods of symptom assessment in psychiatry. Mobile data–based assessment is possible because of the large amounts of diverse information available from a modern mobile phone, including geolocation, screen activity, physical motion, and communication activity. This data may offer much more fine-grained insight into mental state than traditional methods, and so we are motivated to pursue research in this direction. However, passive data retrieval could be an unwelcome invasion of privacy, and some may not consent to such observation. It is therefore important to measure patients’ willingness to consent to such observation if this approach is to be considered for general use. Objective The aim of this study was to measure the ownership rates of mobile phones within the patient population, measure the patient population’s willingness to have their mobile phone used as an experimental assessment tool for their mental health disorder, and, finally, to determine how likely patients would be to provide consent for each individual source of mobile phone–collectible data across the variety of potential data sources. Methods New patients referred to a tertiary care mood and anxiety disorder clinic from August 2016 to October 2017 completed a survey designed to measure their mobile phone ownership, use, and willingness to install a mental health monitoring app and provide relevant data through the app. Results Of the 82 respondents, 70 (85%) reported owning an internet-connected mobile phone. When asked about installing a hypothetical mobile phone app to assess their mental health disorder, 41% (33/80) responded with complete willingness to install with another 43% (34/80) indicating potential willingness to install such an app. Willingness to give permissions for specific types of data varied by data source, with respondents least willing to consent to audio recording and analysis (19% [15/80] willing respondents, 31% [25/80] potentially willing) and most willing to consent to observation of the mobile phone screen being on or off (46% [36/79] willing respondents and 23% [18/79] potentially willing). Conclusions The patients surveyed had a high incidence of ownership of internet-connected mobile phones, which suggests some plausibility for the general approach of mental health state inference through mobile phone data. Patients were also relatively willing to consent to data collection from sources that were less personal but expressed less willingness for the most personal communication and location data.