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

Abstract

BackgroundIt 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.ObjectiveThe 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.MethodsNew 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.ResultsOf 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).ConclusionsThe 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.

Smartphones in mental health: a critical review of background issues, current status and future concerns

“…In addition to the hardware and software concerns, there are special concerns with passive monitoring related to stigma and privacy (Bauer et al 2017). Of patients interested in apps, a significant minority does not want to be monitored and tracked or provide private sensor-based data (Thornton and Kay-Lambkin 2018;Klasnja et al 2009;Torous et al 2018;Ben-Zeev et al 2016;Di Matteo et al 2018;Hendrikoff et al 2019). In a study of mobile sensing of 126 adults with depression recruited from the general public in Switzerland, half uninstalled the app within 2 weeks (Wahle et al 2016).…”

Apps for Older People’s Pain Self-Management: Perspectives of Primary Care and Allied Health Clinicians

“…In addition, there was some uncertainty regarding how this level of data access by clinicians could impact the patient and their behaviours. Although patients in general are open to sharing their self-assessment data with clinicians via an app [47,48], some authors consider clinicians' ability to scrutinize their patients' actions and communications on a very fine-grained level to be unnecessarily intrusive [51]. Pain app studies involving older people who use the data sharing feature of the app areis needed to better understand this area.…”

Futures for Health Research Data Platforms From the Participants’ Perspectives

“…Each card contained a different 'information item' (see Table 2). The choice of items was based on the analysis of previous works about data sensitivity and willingness to share [12,14,37,47,61,83,86,121,123,141,146], data collected in the different platforms, and mobile sensing frameworks for behavioural monitoring [23]. Three medical doctors were consulted to confirm that the card set contained only data relevant to health research.…”

“…Some factors can affect the intensity of privacy concerns. Previous research has found that more sensitive data types are disclosed less often [86,123], such as audio recordings [37], browser history [14], message/phone logs and social media activity [47], camera pictures [121], financial information [146], home address [83], feelings of loneliness [61], sexually transmitted diseases [146], toilet use [12], and any health-related data in general [141]. Privacy is also perceived differently across individuals [22].…”